Summary

Since Utah voters approved a November 2018 ballot measure to adopt the Affordable Care Act (ACA) Medicaid expansion up to 138% of the federal poverty level (FPL), the state legislature has taken steps to roll back the full expansion. The state enacted a law in February 2019 that amended the voter-approved ballot measure, requiring the state to submit a series of Section 1115  waiver requests. This brief provides additional detail about the ballot measure, the state legislation, the status of the required waiver submissions, and the broader implications of Utah’s waivers for other states.

• Bridge Plan. The first waiver, the “Bridge Plan,” was approved in March 2019, and allowed the state to implement a coverage expansion to 100% FPL beginning April 1, 2019, at the state’s regular matching rate. The approved waiver also included an enrollment cap and a work requirement.
• Per Capita Cap. On July 31, 2019, Utah submitted to the Centers for Medicare and Medicaid Services (CMS) its “Per Capita Cap” proposal for a new waiver that would continue a number of provisions already approved as well as a request for the enhanced match for partial expansion to 100% FPL and a limit on enhanced federal funding. CMS issued a general statement in late July and a letter to the state in mid-August confirming that they would not approve the enhanced matching rate for an expansion that does not go to 138% FPL or that includes an enrollment cap.¹  Given CMS guidance about partial expansion, it seems clear that some provisions of the Per Capita Cap waiver will not be approved, but CMS says it is reviewing the other provisions.
• Fallback Plan. The state legislation requires the submission of a “Fallback Plan” waiver should CMS not approve the Per Capita Cap waiver. On November 4, 2019, Utah submitted to CMS its Fallback Plan waiver that would expand Medicaid to 138% FPL and would continue some other provisions in the earlier waivers, including an enrollment cap. In its submission letter, Utah says that CMS rejected its PCC waiver request, although the waiver is still listed as pending on CMS’ website as of November 14, 2019.
• Ballot Approved Expansion. If CMS does not approve the Fallback Plan by July 1, 2020, Utah must adopt the full Medicaid expansion without restrictions as required by the ballot initiative.

Utah Ballot Initiative and Subsequent Legislation

As in Idaho and Nebraska, Utah voters supported a November 2018 ballot measure to adopt the full Medicaid expansion as set out in the ACA. Utah voters approved a full ACA expansion to cover nearly all adults with income up to 138% of the federal poverty level (FPL, $17,236/year for an individual in 2019), an April 1, 2019, implementation date, and a state sales tax increase as the funding mechanism for the state’s share of expansion costs. By implementing a full ACA expansion, Utah would qualify for the substantially enhanced (93% in 2019 and 90% in 2020 and thereafter) federal matching funds. The expansion population in Utah includes childless adults ages 19-64 with income from 0% to 138% FPL and parent/caretakers ages 19-64 with income from 60% to 138% FPL.²  The fiscal note from the ballot initiative estimated that approximately 150,000 newly eligible individuals would enroll in Medicaid in fiscal year 2020.

However, the Utah legislature significantly changed and limited the coverage expansion that the voters adopted. Utah is one of 11 states (out of the 21 states that allow state laws to be adopted via a ballot initiative) that have no restrictions on how soon or with what majority state legislators can repeal or amend voter-initiated statutes. Utah Governor Gary Herbert signed Senate Bill 96 into law on February 11, 2019. The state released an implementation toolkit that follows the legislation in calling for multiple steps to implement an expansion of Medicaid coverage to adults in ways that differ from a full ACA expansion (Figure 1).

Utah’s Amended Waiver Approved March 2019

On March 29, 2019, CMS approved an amendment to Utah’s existing Section 1115 demonstration waiver to expand Medicaid to a capped number of adults with income up to 100% FPL beginning on April 1, 2019, at the state’s regular Medicaid matching rate, not the enhanced ACA matching rate.³  The authority to cover this “Adult Expansion Population” expires on January 1, 2021. The Adult Expansion Population under the waiver includes childless adults ages 19-64 with income from 0 to 100% FPL⁴  and parent/caretakers ages 19-64 with income from 60% FPL to 100% FPL,⁵  a more limited coverage expansion than the 138% FPL approved by the voters (Figure 2). The state estimates that approximately 70,000 to 90,000 people will be covered under the waiver with financial eligibility limited to 100% FPL, about 40,000 fewer compared to a full ACA expansion to 138% FPL.⁶ 

Instead of the 90% enhanced federal matching rate tied to newly eligible adults under a full ACA expansion, Utah is receiving its current, traditional federal matching rate of 68%. This lower matching rate will result in higher state costs for expanding coverage to 100% FPL than for a full expansion to 138% FPL (Figure 3).⁷  Utah refers to the March 2019 waiver amendment as the “Bridge Plan” because the state is seeking further waiver amendments as required by Senate Bill 96 and described in the text below. Utah’s pre-ACA coverage expansion, authorized by its waiver prior to the Bridge Plan amendment, provided limited benefits and preventive care (see Box 1 below).

Utah’s amended waiver includes an enrollment cap to be imposed at state option on the Adult Expansion Population, meaning that not all eligible people may be able to enroll in coverage. The waiver allows the state to close enrollment for the Adult Expansion Population, which could limit enrollment further than the coverage estimates noted above. The waiver does not specify a pre-determined maximum number of people to be covered but instead allows the state to stop enrolling eligible people “if projected costs exceed state appropriations.” If the enrollment cap is reached, the state will not maintain a waiting list; instead, eligible individuals will have their applications denied and will have to reapply for coverage when enrollment re-opens. Consequently, individuals who apply at the beginning of a state fiscal year could be more likely to gain coverage than those who apply later in the fiscal year, even though they are otherwise eligible, if the state imposes the enrollment cap. It is possible that individuals with lower incomes or higher needs, compared to those already enrolled, might be barred from enrolling in coverage as a result of the timing of their application due to the enrollment cap.

Utah’s amended waiver also includes a work requirement as a condition of eligibility for the Adult Expansion Population, beginning no sooner than January 1, 2020.⁸  In Utah, individuals subject to the work requirement must complete certain activities within the first three months of each 12-month eligibility period or qualify for an exemption. Possible exemptions include age of 60 or older, pregnancy, responsibility to care for a dependent under age six in the same household or a disabled person, and physical or mental inability to meet the work requirement as determined by a medical professional, among others. Those who fail to do so will lose coverage for the rest of the year or until they fulfill the requirement. Qualifying activities include registering for work through the state’s online system, completing an online employment training needs assessment, completing online job training modules identified through the assessment, and applying for work with at least 48 potential employers.

Utah’s Per Capita Cap Waiver Submitted July 2019

In accordance with SB 96, Utah submitted its “Per Capita Cap” (PCC) waiver application to CMS on July 31, 2019, which includes a request to receive the 90/10 ACA enhanced matching rate for expansion adult coverage up to 100% FPL; however, CMS guidance states that such a policy would not be approved.⁹  The waiver would move all expansion adults (parents 60-100% and childless 0-100%, including the Targeted Adult group) and the waiver services provided to these populations from the existing waiver to the new waiver. The Targeted Adult population includes adults ages 19-64 without dependent children with income up to 5% FPL who are chronically homeless or involved in the criminal justice system and in need of substance use or mental health treatment.

Days before Utah’s submission, a CMS statement indicated that it would not approve the 90/10 ACA enhanced matching rate for an expansion population smaller than the full group up to 138% FPL, arguing that such policies would “invite continued reliance on a broken and unsustainable Obamacare system.”¹⁰  Therefore, the result of no partial expansion is similar to the prior administration, but for different publicly-stated reasons.¹¹  In its submission letter, the state provided several reasons for submitting the waiver as envisioned in SB 96, including the unknown outcome of the Texas vs U.S. litigation challenging the ACA, value in getting a formal response from CMS, and the state’s hopes for approval of other waiver provisions. CMS also indicated in an August 16, 2019 letter¹²  to Utah that it would not authorize an enrollment cap with enhanced ACA matching funds for the expansion group as Utah requested; see more on this guidance in the Fallback Plan section below.

The waiver also requests a limit on enhanced federal funding through what the state describes as a “per capita cap” funding mechanism. Under the waiver request, an aggregate annual per capita cap would be calculated based on the weighted total of separate per capita caps for three enrollment groups: targeted adults and enrollees receiving IMD services for substance use disorder (SUD), expansion parents, and expansion adults without children.¹³  Expenditures in excess of the total per capita cap but within budget neutrality would receive the State’s traditional FMAP rather than the enhanced matching rate.¹⁴  The state would establish per enrollee amounts for each group for a base year and apply a trend rate for future demonstration years.

Unlike federal legislative per capita cap proposals, the PCC waiver request would not impose a cap on all federal Medicaid dollars. The state request would apply only to the enhanced matching dollars and not all federal matching dollars, include a mechanism for automatic rebasing, and allow for adjustments for unforeseen events like a public health emergency, natural disaster, major economic event, new federal mandate, or any subsequent waivers approved by CMS that affect the populations under this waiver. The state assumes a “with waiver” per capita cap growth rate of 4.2%, lower than the anticipated “without waiver” per member per month cost growth rate of 5.3%.

Among other provisions, the PCC waiver proposal also includes a lockout period for “Intentional Program Violations” (IPV) committed when documenting Medicaid eligibility. The state seeks waiver authority to impose a six-month coverage lockout period if an individual commits an IPV. Utah defines an IPV as occurring when there is “clear and convincing evidence that the individual knowingly, willingly, or recklessly provided false or misleading information with an intent to receive benefits to which he or she was not eligible to receive” and may find the individual responsible to repay any medical assistance received for which he or she was not eligible. An IPV would include not reporting a change in eligibility within ten days with the intent to obtain benefits to which the enrollee is not entitled. Under Utah’s existing Medicaid policy, the state is currently determining IPVs using this definition and assessing overpayments using an administrative hearing process. The new authority that the PCC waiver seeks is to impose coverage lockouts when an IPV determination is made. Utah also has a separate process where certain cases are referred for potential criminal fraud prosecution in court.

The waiver request includes other eligibility, benefit, and process changes. The PCC waiver’s other new provisions include expenditure authority for housing-related services and supports and authority to provide up to 12-month continuous Medicaid eligibility. The state asks for waiver authority to limit these provisions to certain geographic areas or populations that are not specified in the waiver. The waiver also seeks authority to not allow hospitals to make presumptive eligibility determinations and to allow the state to continue a limited benefit package for expansion parents. Finally, the waiver seeks to waive some managed care rules, including advance CMS approval of actuarially sound rates, managed care contracts, and directed payments.

In addition to the new provisions, the PCC waiver seeks to maintain authority to implement provisions approved in March 2019, including the enrollment cap (currently approved at the regular federal matching rate) and the work requirement for the expansion population. As noted above, CMS has indicated that it would not approve the enhanced federal matching rate for the ACA expansion in the context of enrollment caps. Based on its experience with SNAP work requirements, the state estimates that approximately 70 percent of expansion adults (49,000-63,000 individuals) will meet an exemption to the work requirements. The state further projects that, among individuals who do not meet an exemption or good cause reason, approximately 75-80 percent will comply with the work requirements. Other provisions that were approved in March 2019 include dental benefits for Targeted Adults receiving SUD treatment, SUD treatment in institutions for mental disease (IMD), a targeted SUD residential withdrawal pilot in Salt Lake County, and a waiver of EPSDT for 19- and 20-year-olds.

Utah’s Fallback Plan Waiver Submitted November 2019

As directed by SB 96, Utah submitted its Fallback Plan waiver request on November 4, 2019, seeking authority for a coverage expansion up to 138% FPL with the 90/10 ACA enhanced matching funds and an enrollment cap.¹⁵  In its submission letter, Utah says that CMS rejected its PCC waiver request, although the waiver is still listed as pending on CMS’ website as of November 14, 2019. Like the PCC waiver, the Fallback Plan includes coverage lockouts for intentional program violations, elimination of hospital presumptive eligibility, expenditure authority for housing-related services and supports, and modifications for managed care rules; unlike the PCC waiver, it does not request the authority to provide 12-month continuous Medicaid eligibility for the expansion population. The Fallback Plan seeks to continue the work requirement and enrollment cap approved in March 2019 but does not seek a per capita cap on federal funds at the enhanced matching rate.

As noted above, CMS has indicated that it would not authorize an enrollment cap with enhanced ACA matching funds for the expansion group, as Utah requested in both the PCC and Fallback waivers. In addition to expanding coverage to 138% FPL and receiving the 90/10 ACA enhanced match rate, the Fallback Plan requests to continue the enrollment cap approved by CMS in March 2019. In an August 16, 2019, letter¹⁶  to Utah following the state’s PCC waiver submission, CMS noted that, if implemented, an enrollment cap would “have the effect of limiting enrollment to less than the full group otherwise eligible for Medicaid, which would be tantamount to ‘partial expansion.’” CMS noted that it would therefore not authorize the enhanced matching rate if the enrollment caps were implemented. In its submission letter, Utah provided two reasons for submitting the Fallback Plan waiver as envisioned in SB 96 despite this CMS guidance: the unknown outcome of the Texas vs U.S. litigation challenging the ACA and the state’s hopes for approval of other waiver provisions. As explained in Box 1, enrollment caps are no longer necessary to ensure federal budget neutrality because the ACA now allows states to access federal Medicaid funds for this coverage directly through the creation of the new adult eligibility pathway and the availability of federal matching funds.

Box 1: Coverage Expansion under Utah’s Waiver Prior to the ACA

In 2014, the ACA for the first time authorized federal Medicaid matching funds for coverage for nearly all nonelderly adults. Prior to 2014, federal Medicaid funds could only be used to cover pregnant women, parent/caretakers, children, seniors, and people with disabilities. Adults without dependent children were ineligible for Medicaid, no matter how poor they were. Before the ACA, some states used Section 1115 waivers to establish coverage expansions beyond the limits of federal law. Because federal Medicaid funds could not be accessed directly to cover these adults, these waivers included provisions to generate savings to fund coverage expansions, such as limited benefit packages, premiums, and/or mandatory managed care enrollment, and sometimes enrollment caps as a way to limit federal spending and ensure federal budget neutrality.¹⁷  However, budget neutrality is no longer a consideration for such coverage expansions under waivers now that federal Medicaid law, as amended by the ACA, includes an eligibility pathway and allows states to receive federal Medicaid matching funds to cover nearly all nonelderly adults, including those without dependent children, up to 138% FPL without the need for a waiver.

Utah’s existing Section 1115 waiver was first approved in 2002 and included a pre-ACA coverage expansion (called the Primary Care Network, PCN) to parents with income above the state plan limit (60% FPL) and childless adults (for whom no state plan coverage was available). As of March 2019, the PCN income limit was 100% FPL. The PCN coverage expansion provided a limited benefit package of primary and preventive services¹⁸  to a capped number of these adults and was funded by reduced benefits for traditional low-income (categorically and medically needy) parents. The March 2019 waiver amendment suspends authority for Utah’s pre-ACA PCN coverage expansion and moves the 17,500 parents and childless adults in the PCN group as of March 2019 to the new “Adult Expansion Population” (described in the section above on Utah’s Amended Waiver Approved Mach 2019) effective April 1, 2019.¹⁹ 

The Fallback Plan waiver requests to expand the eligibility criteria for the Targeted Adult group and seeks authority to suspend enrollment for sub-populations of Targeted Adult populations. The Targeted Adult group is comprised of three populations and Utah currently has authority to suspend enrollment for the entire Targeted Adult group or separately for any of the three populations. In the Fallback Waiver, Utah seeks to expand the Targeted Adult Medicaid criteria to include three new sub-populations: homeless victims of domestic violence, individuals who are court ordered to receive substance abuse or mental health treatment, and individuals on probation or parole with serious mental illness and/or serious substance use disorder. Utah estimates that an additional 7000 individuals will be eligible for the Targeted Adult group due to the expanded criteria. Any suspension of enrollment of Targeted Adult populations or sub-populations would occur through the state’s administrative rule-making process. If enrollment is suspended for Targeted Adults, individuals could be eligible in the Expansion Adult group (provided that enrollment has not been suspended there); however, unlike the Expansion Adult group, Targeted Adults receive 12-month continuous eligibility and dental benefits (if receiving substance use disorder treatment services).

Under the Fallback Plan waiver, adults with incomes between 100% and 138% of the FPL would pay monthly premiums in order to maintain coverage under Medicaid expansion. Monthly premiums would be $20 for a single individual or $30 for a married couple. Utah requests the authority to raise these premiums to reflect annual increases in the FPL through the state administrative rulemaking process. Beneficiaries who fail to pay their premium in the month prior to the month of eligibility would be dis-enrolled from Medicaid and required to pay all past-due premiums to re-enroll, unless it had been more than six months from when coverage ended. Members of federally recognized tribes and those identified as medically frail would be exempt from paying premiums. The state estimates that 40,000 individuals would be required to pay these monthly premiums and that approximately 3% of these beneficiaries would lose eligibility due to failure to pay.

The Fallback Plan waiver would also add a premium surcharge for non-emergent use of the emergency department. The state seeks to require beneficiaries with incomes between 100% and 138% of the FPL to pay a $10 premium surcharge for any use of the emergency department considered non-emergent, up to a maximum of $30 per quarter. Individuals would receive one warning after the first occurrence of non-emergent emergency department use, and any subsequent non-emergent uses would result in the $10 surcharge to their monthly premium. An individual with five or more occurrences of non-emergent use within the most recent twelve months would be referred to the Medicaid Restriction Program, which could take additional action such as limitations on where the individual may receive services. Members of federally recognized tribes, individuals receiving employer-sponsored insurance reimbursement, and medically frail individuals would be exempt from this provision. The state estimates that between 1500 and 2000 beneficiaries would owe surcharges each month.

In addition to these provisions, the Fallback Plan waiver also seeks authority to make additional changes to the Medicaid expansion through the state administrative rulemaking process without requiring CMS approval. Utah expects that most of these changes, if enacted, would decrease total beneficiary months and demonstration expenditures. The changes include:

• Making enrollment begin on the first of the month after application for beneficiaries with incomes above 100% FPL.
• Eliminating retroactive eligibility for beneficiaries with incomes above 100% FPL.
• Changing the benefit package for expansion beneficiaries and Targeted Adult groups to the state’s non-traditional package. This would restrict all Medicaid beneficiaries to this more limited plan except for those identified as medically frail.
• Exempting certain income groups from the employer-sponsored insurance requirement.
• Suspending housing supports.
• Making enrollment in managed care mandatory or optional for different groups of expansion adults.
• Opening or suspending enrollment for each population group within the Target Adult population.

What is Next?

The Fallback Plan waiver is currently under consideration at CMS. Given CMS guidance about partial expansion, it seems clear that the request for enhanced ACA matching funds with an enrollment cap on the expansion group will not be approved, but CMS says it is reviewing the other requests. In its submission letter, Utah requested that CMS approve the Fallback Plan waiver by December 31, 2019, for implementation on January 1, 2020.

If CMS does not approve the Fallback Plan by July 1, 2020, Utah will adopt the full Medicaid expansion plan with no restrictions as set out by the ACA and approved in the ballot initiative. This plan would include coverage of all eligible adults up to 138% FPL at the ACA enhanced matching rate and would use a state plan amendment instead of waiver authority. It would not include a work requirement, enrollment cap, or other eligibility and enrollment restrictions as proposed in the waiver proposals described above.²⁰ 

1. CMS statement released July 29, 2019 and CMS letter to Governor Herbert on August 16, 2019:  https://www.cms.gov/newsroom/press-releases/cms-statement-partial-medicaid-expansion-policy, https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ut/per-capita-cap/ut-per-capita-cap-correspondence-ltr-20190816.pdf ↩︎
2. Under a full expansion, certain Targeted Adult populations currently covered through state waivers would transition to coverage under the expansion group. ↩︎
3. The March 2019 waiver amendment was approved based on the state’s June 2018 pending amendment request, which sought to cover adults ages 19 to 64 up to 95% FPL (effectively 100% FPL with the 5 percentage point FPL disregard) at the ACA enhanced match with an enrollment cap and a work requirement. The June 2018 waiver amendment request also sought to waive EPSDT for 19 and 20 year olds and authority for mandatory Medicaid premium assistance for individuals with access to employer sponsored insurance. ↩︎
4. Utah’s waiver continues to cover the Targeted Adult population, which was added in 2017, and includes adults ages 19-64 without dependent children with income up to 5% FPL who are chronically homeless or involved in the criminal justice system and in need of substance use or mental health treatment. The waiver provides that the Targeted Adult group or any subset may be closed to new enrollment at the state’s election. ↩︎
5. Members of the Adult Expansion Population who are childless adults receive full state plan benefits. Members of the Adult Expansion Population who are parent/caretakers receive the same benefit package as traditional low-income parents under Utah’s waiver, which is more limited than Utah’s state plan benefit package. For example, private duty nursing, long-term care, eyeglasses, and non-emergency medical transportation are not covered, and dental services are generally covered only in emergencies. There also are additional surgical exclusions, a limit of 16 physical and occupational therapy visits per year, hearing aids only for congenital hearing loss, and some excluded medical supplies and equipment. Utah’s waiver continues to not provide EPSDT treatment services for 19 and 20 year olds. In addition, the March 2019 waiver amendment authorizes services for all Medicaid-eligible individuals who are primarily receiving substance use disorder treatment and withdrawal management services as short-term “institution for mental disease” residents. Individuals in the Adult Expansion Population with access to employer sponsored insurance must enroll in that coverage and receive Medicaid premium assistance as of January 1, 2020. If an individual misses the period to enroll in employer-sponsored insurance, they are ineligible for Medicaid. Individuals must pay employer-sponsored insurance premiums out-of-pocket and will be reimbursed by the state, minus the Medicaid premium applied to those from 101-138% FPL that the state is seeking in the Fallback waiver amendment. ↩︎
6. UT Dep’t of Health, Utah’s Medicaid Expansion Implementation Toolkit at 2. ↩︎
7. Benjamin Wood, Salt Lake Tribune, “Lawmakers’ rejection of Proposition 3 is costing Utahns $2.5M each month, state Medicaid director says” (August 23, 2019), https://www.sltrib.com/news/politics/2019/08/23/lawmakers-rejection/. ↩︎
8. The approval came two days after a federal district court set aside waivers in Arkansas and Kentucky that included work and reporting requirements. The case is now on appeal. ↩︎
9. The request for the enhanced ACA match would also apply to the Targeted Adult population. ↩︎
10. CMS statement released July 29, 2019, https://www.cms.gov/newsroom/press-releases/cms-statement-partial-medicaid-expansion-policy. ↩︎
11. CMS guidance issued in 2012 concludes that “Congress directed that the enhanced matching rate be used to expand coverage to [138%] of FPL. The law does not provide for a phased-in or partial expansion.”, https://www.cms.gov/CCIIO/Resources/Files/Downloads/exchanges-faqs-12-10-2012.pdf ↩︎
12. CMS letter to Utah Governor Gary Herbert on August 16, 2019, https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ut/per-capita-cap/ut-per-capita-cap-correspondence-ltr-20190816.pdf. ↩︎
13. Some expenditures would be excluded from the per capita caps including emergency only funding for non-citizens, expenditures for enrollees in federally recognized tribes and inpatient stays for incarcerated individuals. ↩︎
14. A number of enrollment groups are included in the overall waiver and subject to budget neutrality calculations, but excluded from the per capita cap funding calculations. ↩︎
15. Utah submitted the Fallback Plan waiver as an amendment to the state’s already-approved PCN waiver (unlike the PCC waiver, which it submitted as a new, separate waiver). ↩︎
16. CMS letter to Utah Governor Gary Herbert on August 16, 2019, https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ut/per-capita-cap/ut-per-capita-cap-correspondence-ltr-20190816.pdf. ↩︎
17. Under long-standing federal policy, Section 1115 waivers must be budget neutral to the federal government, meaning that federal costs under the waiver cannot exceed what federal costs would have been without the waiver. ↩︎
18. Covered services included primary care physician, lab, radiology, durable medical equipment, emergency room services, pharmacy, dental, and vision, often with different limitations than the state plan benefit package. Inpatient hospital, specialty care, and mental health services were not covered. ↩︎
19. UT Dep’t of Health, Utah’s Medicaid Expansion Implementation Toolkit at 3. ↩︎
20. The full expansion also would provide traditional Medicaid benefits under an alternative benefit plan as required under the ACA. It would not limit benefits for expansion parents as described in endnote 3 and would not waive EPSDT for 19 and 20 year olds. ↩︎

As the largest payer of substance use disorder services in the United States, Medicaid plays a central role in state efforts to address the opioid epidemic. In addition to increasing access to addiction treatment services through the expansion of Medicaid under the Affordable Care Act (ACA), states are expanding Medicaid addiction treatment services, increasing provider reimbursements, restricting opioid prescribing, and implementing delivery system reforms to improve the quality of treatment services. While many states have been tracking progress and challenges in these efforts, uniqueness of state systems can make it difficult to compare or benchmark across states. This brief draws on analyses provided by the Medicaid Outcomes Distributed Research Network (MODRN), a collaborative effort to analyze data across multiple states to facilitate learning among Medicaid agencies. It profiles the opioid epidemic among the Medicaid population in six states participating in MODRN that also have been hard hit by the opioid epidemic: Kentucky, Maryland, Ohio, Pennsylvania, Virginia, and West Virginia. The brief also draws on interviews with officials from the state Medicaid and other health agencies. Key findings include following:

• The prevalence of opioid use disorder (OUD) among Medicaid enrollees in the study states (5% in 2016) is higher than the national average, reflecting regional concentration of the opioid epidemic within the country. In states that expanded Medicaid under the ACA, more than half of Medicaid enrollees with opioid use disorder (56%) qualified through the expansion. However, prevalence of OUD among the expansion population (6.9%) is similar to other Medicaid eligibility groups.
• State officials indicated that the ACA Medicaid expansion allowed previously uninsured people with undiagnosed or untreated substance use disorders to receive treatment. To prevent opioid addiction among Medicaid enrollees, states are reducing opioid prescribing to Medicaid enrollees through greater monitoring, use of prior authorization, and other limits on opioid prescribing. In addition, all six states have taken steps to cover the full continuum of treatment services, and five of the six states have received Section 1115 IMD waivers to help provide the full continuum of treatment services.
• All six states cover evidence-based medication-assisted treatment (MAT). Despite these efforts, less than half of Medicaid enrollees with opioid use disorder in the six states receive any MAT. Among those receiving pharmacotherapy, 52% received at least six months of treatment.

The six states are taking other actions to improve access to and quality of addiction treatment services, such as recruiting and training more providers to prescribe buprenorphine, eliminating prior authorization requirements for buprenorphine, improving transitions between hospital settings and community-based care, and adopting new models of care delivery that emphasize greater coordination of MAT with other physical and behavioral health services. Most are also leveraging new federal funding through SAMHSA to work in concert with Medicaid reforms.

Introduction

In the United States, Medicaid covers 38 percent of non-elderly adults with an opioid use disorder.¹  As the largest payer of substance use disorder services in the United States, Medicaid plays a central role in state efforts to address the opioid epidemic, largely driving policy on improving delivery of treatment services.²  States may adopt several policy options to increase access to opioid use disorder treatment, improve quality of care and reduce overdose deaths among Medicaid enrollees, including expanding benefits to include a broader range of addiction treatments, increasing provider reimbursements, restricting opioid prescribing, and implementing delivery system reforms. While many states have been tracking progress and challenges in these efforts, uniqueness of state systems can make it difficult to compare or benchmark across states, and there is limited data to measure quality or outcomes of opioid treatment efforts. In addition, the expansion of Medicaid under the ACA extended eligibility to many people with substance use disorder who previously lacked access to affordable insurance coverage, but there is limited data on how expansion increased coverage and access to treatment services for opioid use disorder (OUD).

This brief draws on analyses provided by the Medicaid Outcomes Distributed Research Network (MODRN),³  a collaborative effort to analyze data across multiple states to facilitate learning among Medicaid agencies, to profile the opioid epidemic among the Medicaid population in six states – Kentucky, Maryland, Ohio, Pennsylvania, Virginia, and West Virginia. All of these states participate in MODRN and include parts of Appalachia, a region hard hit by the opioid epidemic. MODRN data provides a snapshot of the opioid epidemic along several measures not available in public data. The brief focuses on adolescent and non-elderly adult Medicaid enrollees (ages 12-64) who are not dually eligible for Medicare. As of the time of data collection, Virginia was the only state that had not expanded Medicaid under the ACA, though it has since done so. The brief also draws on interviews with officials from the state Medicaid and other health agencies and describes the major strategies and initiatives these six states are using to address the opioid epidemic among their Medicaid populations.

Which Medicaid enrollees have opioid use disorder?

The prevalence of OUD among Medicaid enrollees in the study states is higher than the national average, reflecting regional concentration of the opioid epidemic within the United States. Among Medicaid enrollees ages 12-64 who are not dual Medicare/Medicaid eligible, the percent with a diagnosis of opioid use disorder increased from 3.8 percent in 2014 to 5.0 percent in 2016 in the six study states (Figure 1). This trend could reflect a true increase in prevalence, increased screening and diagnosis, or both. This prevalence compares to an estimated national average of <1% for people age 12-64 overall and 2% for Medicaid enrollees age 12-64⁴  and reflects the fact that the study states include areas hardest hit by the opioid epidemic. States also noted that Medicaid covers a disproportionately large share of people with OUD in their states.

Across the study states, OUD prevalence is higher among working-age adults, males, and whites compared to other demographic groups. Among different age groups, enrollees aged 35-44 have the highest OUD prevalence at 7.7 percent, with children ages 12-17 having the lowest prevalence at less than 1 percent (Figure 2). Prevalence of OUD is higher among males compared to females (5.7 percent compared to 4.4 percent) and among Whites compared to African-Americans and Hispanics (6.6 percent compared to 2.7 percent and 2.4 percent) (Figure 3).

Though OUD prevalence is higher among Medicaid enrollees in rural areas, states report a growing problem in urban areas. A greater share of enrollees in rural areas have OUD compared to urban areas (5.4 percent compared to 4.8 percent, Figure 3). State respondents noted the social and economic distress in many rural communities and small towns in their state as one of the key drivers of the opioid epidemic, which may explain in part the higher prevalence among white, working age adults noted above. National data also show higher prevalence of OUD among low income, unemployed adults suffering from other psychosocial distress.⁵  However, respondents also stressed that OUD is also a growing problem for their urban populations. In fact, despite the higher prevalence in rural areas, in 2016, 74 percent of Medicaid enrollees with OUD lived in urban areas across the six states (findings not shown). Respondents in one state also noted differences in the nature of the opioid epidemic between urban and rural areas, with urban areas experiencing more of a problem with addiction to heroin, fentanyl, and other synthetic opioids, while prescription opioids were a greater contributor to the problem in rural areas.

Medicaid Expansion and OUD

Though many Medicaid enrollees with OUD qualify through the ACA Medicaid expansion, prevalence of OUD among the Medicaid expansion population is similar to that for other eligibility groups. For the five out of six states that had expanded Medicaid prior to January 1, 2019, 6.9 percent of enrollees who qualified through Medicaid expansion had an OUD (Figure 4),⁶  and among all Medicaid enrollees with an OUD, 56 percent qualified through Medicaid expansion in 2016 (findings not shown). OUD prevalence among the Medicaid expansion population in the study states is slightly higher than other adults without disabilities (4.7%) and pregnant women (5.9%) and lower than prevalence among adults with disabilities (7.4%).

Reflecting eligibility criteria, the characteristics of enrollees with OUD who qualify through the ACA expansion differ from those who qualify for Medicaid through traditional eligibility pathways. Compared to enrollees with OUD who are eligible through pre-expansion criteria in the states that expanded Medicaid, the expansion population with OUD is disproportionately likely to be age 21-34 and male (Table 1), likely reflecting characteristics of adults who were ineligible for Medicaid under traditional pathways but gained eligibility under the ACA. State Medicaid officials also cite being a military veteran and having a history of employment in high-risk occupations (e.g. manufacturing, mining) as additional risk factors for OUD among the expansion population.⁷ 

State policymakers view Medicaid expansion as an important tool for expanding access to OUD treatment by increasing coverage among populations with a high prevalence of OUD. Respondents in some states acknowledged concerns raised by some stakeholders about whether Medicaid expansion may have exacerbated the opioid addiction crisis by increasing access to opioid prescriptions, although it did not appear to be a major concern in any of the six states. Consistent with recent research, state officials maintain that not only have they not seen any evidence that Medicaid expansion exacerbated opioid addiction, but that in fact Medicaid was providing addiction treatment services for enrollees who previously had undiagnosed or unmet needs for these services or who were on high-dose opioids before they enrolled in Medicaid.⁸  States also reported that Medicaid expansion enabled them to expand the scope of services available to people with OUD, as Medicaid-covered benefits are broader than those available through state-funded programs for uninsured people.

Initiatives to Focus on OUD among Special Populations

In addition to increasing access to treatment through Medicaid expansion, most state Medicaid programs have also focused special attention on certain populations who are vulnerable to the effects of opioid addiction, such as pregnant women and newborns. For example, West Virginia established the first center in the United States to provide support services to newborns with Neonatal Abstinence Syndrome and their families. West Virginia’s Medicaid agency has established special rates to accommodate the specialized services provided by the center. Creating new data systems that can match a mother to her child within the Medicaid system has also been a priority as states frequently report lack of data as a barrier to measuring quality of care for pregnant women and infants.

All study states also report efforts to connect people in the criminal justice system to care. As studies show that more than half of the incarcerated population meet the criteria for drug dependence or abuse, state Medicaid agencies have also focused special attention on individuals released back to the community.⁹  All six states report taking measures to identify incarcerated individuals likely to be eligible for Medicaid and to get them started on treatment before or shortly after their release. For instance, Ohio’s pre-release program uses peer educators to enroll likely eligible prisoners into Medicaid prior to release.¹⁰  The program is intended to reduce the amount of time between release and accessing treatment, thereby reducing accidental overdoses.

What are states doing to limit access to opioids?

Reflecting nationwide trends, all study states have efforts underway to limit access to prescribed opioids. In 2019, all states report using pharmacy benefit management strategies to prevent opioid-related harms.¹¹  Similarly, all six states have taken steps to limit the quantity and dose of opioids prescribed to Medicaid enrollees, as well as requiring prior authorization for opioid prescribing for Medicaid patients.¹²  These steps include such actions as limiting days supplied and dosages (KY, PA, WV) and reducing the number of refills (OH). Ohio, Virginia and Pennsylvania have implemented the CDC guidelines for opioid prescribing in their Medicaid programs, which require prior authorizations to provide oversight of high dosage prescriptions and limit the number of days supplied. All states also report actions to more aggressively use Prescription Drug Monitoring Programs (PDMPs), which track all prescriptions for opioids and other controlled substances in the state. Ohio and West Virginia are using PDMPs to identify clinics and other providers with excessive prescribing practices. States report that such measures have decreased opioid prescribing among Medicaid enrollees. In Virginia, for example, average days supplied for opioid prescriptions decreased 45 percent between 2016 and 2018, while the number of Medicaid enrollees receiving opioid prescriptions dropped by almost 30 percent.¹³ 

What are states doing to facilitate access to treatment for OUD?

All six states now cover the full continuum of treatment services, based on the American Society of Addiction Medicine (ASAM) guidelines.¹⁴  Historically, coverage of addiction treatment services by Medicaid has varied considerably across the study states. Ohio and Pennsylvania provided the full continuum of outpatient, intensive outpatient, and residential treatment services based on ASAM guidelines since before 2016. Similarly, Maryland has covered most ASAM services, with exclusions for some Medicaid populations. While Kentucky, West Virginia, and Virginia have not been as comprehensive in their benefits historically, they have been closing the gap through recent expansions in services. In 2017, Virginia implemented the Addiction and Recovery Treatment Services (ARTS) program, which greatly expanded access to the full continuum of addiction treatment services, increased reimbursement rates for some existing services, and “carved” behavioral health services back into managed care plans in order to increase coordination with physical health services, and established a preferred provider model for OUD treatment. Kentucky and West Virginia have added coverage for methadone treatment and other services, such as Screening, Brief Intervention and Referral to Treatment (SBIRT), peer recovery services (WV), short-term residential services, and withdrawal management.

To facilitate expansion of residential treatment and inpatient detoxification services, five of the six states have received Section 1115 waivers and report that these waivers are crucial in allowing them to provide the full continuum of treatment services. As of October 2019, 26 states have Section 1115 waivers to use federal Medicaid funds for residential facilities of 16 beds or greater, otherwise prohibited through Medicaid’s Institutions for Mental Diseases (IMD) exclusion.¹⁵  Waivers have enabled states to provide treatment services based on ASAM treatment guidelines, specifically for short-term residential treatment services (ASAM Level 3) and medically managed intensive inpatient services (ASAM Level 4). However, there is some concern that reversing the IMD exclusion through waivers could lead to greater reliance on more costly institutional care for the treatment of substance use disorders and possibly prolonged institutional stays for people who could be adequately served in the community. Further, some note that the focus on institutional care without commensurate focus on community-based care may interfere with states’ ability to meet community integration requirements under the Americans with Disabilities Act. For states that had implemented waivers at the time of the study, it was too soon to assess impact. However, analysis of the first year of Virginia’s ARTS program showed that most treatment was provided in outpatient settings. Of the 9,700 Medicaid members who used any ASAM service, only about 200 used residential treatment services (ASAM level 3), while more than 500 used medically managed intensive inpatient services (ASAM 4). By contrast, almost 7,000 members with OUD used outpatient services (ASAM Level 1).¹⁶ 

Medication-Assisted Treatment

Reflecting nationwide trends, all six study states cover medication-assisted treatment (MAT) for OUD, which is considered the “gold standard” for opioid use disorder treatment.¹⁷  MAT includes pharmacotherapy along with psychotherapy and social support. The most common medications used in MAT are methadone and buprenorphine, which is sold either alone or in combination with naloxone (as Suboxone).¹⁸  Extended-release injectable naltrexone is also approved by the FDA for treatment of opioid use disorder. Nationally, 44 states cover MAT.¹⁹  All six study states have elected to cover buprenorphine, as well as naltrexone and methadone treatment (Kentucky will add methadone coverage when its Section 1115 waiver is implemented).

Less than half of Medicaid enrollees with OUD receive any MAT. All six states have implemented measures to support use of MAT within the Medicaid program and have experienced increased rates of MAT use since 2014. However, use of MAT among individuals diagnosed with an OUD remains low at only 48 percent across the six states in this study (Table 2). Even these estimates of treatment among those diagnosed with OUD may overstate treatment rates, since many individuals with OUD go undiagnosed. For example, based on national survey data among those with prescription opioid use disorder, only 17.5 percent report receiving any treatment for it.²⁰ 

Treatment rates vary by demographic and eligibility group. Among those with diagnosed OUD in the six states in 2016, MAT rates are highest among those in the 21-44 age group, among women, among whites, and slightly higher among those living in urban compared to rural areas (Table 2). Comparing enrollees based on eligibility pathway, MAT rates are highest for traditionally eligible, non-disabled adults (56.2 percent) and pregnant women with OUD (53.6 percent), lower for Medicaid expansion adults (48.1 percent) and people qualifying based on a disability (40.0 percent) and significantly lower for people qualifying as children (including adolescents or young adults) (19.2 percent).

In addition, many enrollees receiving MAT are not retained in continuous treatment. The duration of MAT is associated with health outcomes including recovery. Although the amount of time on MAT needed for recovery varies from patient to patient, in general, longer treatment periods result in better outcomes and reduce the risk of relapse. Among Medicaid enrollees in the six states receiving pharmacotherapy for OUD, 52% received at least six months of treatment (Figure 5). Among those receiving pharmacotherapy, enrollees in the 55-64 age group were more likely to have continuous treatment for six months compared to younger age groups (Table 2). Females, African-Americans, and those living in urban areas also had greater continuity of treatment compared to other subpopulations. Continuity was highest among people qualifying based on a disability (61 percent) and lowest among the child/young adult population (18-20 years) (26 percent) (Table 2).

Most (five of six) states report an under-supply of prescribers as a major barrier to increasing MAT for Medicaid enrollees. Historically, pharmacotherapy for treatment of OUD was restricted to methadone delivered by opioid treatment programs (OTPs) accredited by SAMHSA or other approved accrediting bodies. To increase access to MAT, the Drug Addiction Treatment Act of 2000 (DATA 2000) allowed qualified physicians to dispense or prescribe buprenorphine if they completed eight hours of training and applied for and received a waiver from SAMHSA. The Comprehensive Addiction and Recovery Act of 2016 allows nurse practitioners and physician assistants to also receive waivers and prescribe buprenorphine, which Maryland officials cited as significantly increasing the supply of prescribers in that state. While the number of buprenorphine waivered prescribers has increased nationally and across the six states, all states except West Virginia reported provider supply issues. As with other health services, some states reported challenges in enlisting prescribers to accept Medicaid patients. Rates of buprenorphine prescriber participation in Medicaid are likely to be comparable to Medicaid provider participation more broadly, in which acceptance of new Medicaid patients is much higher among primary care physicians (70 percent) compared to psychiatrists (36 percent).²¹ 

Recruiting and training more providers to become buprenorphine prescribers and to increase their patient capacity is a high priority in most of the states. For example, Ohio has taken advantage of grant funding through the 21^st Century Cures Act to train physicians, nurse practitioners, and physician assistants to apply for waivers and provide MAT. While much of the focus is on recruiting primary care providers to become prescribers, some states are also focusing on recruiting more OB/GYNs to become prescribers to increase treatment for pregnant women. Most of the states have also implemented or are planning to increase use of telemedicine in MAT, such as through Project ECHO programs that link primary care practices to specialists in academic settings who provide mentoring and feedback in order to increase access in rural or other underserved areas.²² 

Other barriers to MAT access and continuity cited by state officials include challenges in transitioning patients from one level of care to another and stigma or resistance to MAT. States are focusing on transitioning patients into treatment after acute care hospital stays and emergency departments. Both Kentucky and Pennsylvania have initiatives to encourage health systems to initiate treatment in the hospital setting and connect patients to community providers for ongoing treatment and support. In addition, policymakers noted stigma or resistance not only among patients, but also among some providers, policymakers, law enforcement, and others in the recovery community who object to using opioid-based medications to treat OUD, and prefer abstinence-only and counseling approaches to treatment that have been shown to be less effective than MAT.

States are developing policies to balance increased access to MAT and prevention of misuse. Because MAT treatments are opioid-based, they can be diverted, misused, and sold illegally. Respondents in all six states report current or past problems with “cash clinics,” in which patients pay physicians out-of-pocket for the cost of the visit to receive buprenorphine prescriptions, with little assurance that appropriate care guidelines are followed or that individuals are prevented from diverting prescriptions into the community. At the same time, most state respondents noted that overly restrictive policies on buprenorphine prescribing – such as stringent prior authorization requirements – can inhibit access to these effective medications for patients. Ohio, Pennsylvania, and Virginia have recently loosened prior authorization programs to encourage providers to deliver buprenorphine and reduce provider supply-related barriers to treatment access. For example, Virginia has eliminated prior authorizations for certain “preferred” providers, and Pennsylvania has required its managed care organizations to make at least one OUD medication be available on a preferred drug list without prior authorization. In contrast, West Virginia continues to carefully regulate providers authorized to prescribe buprenorphine, such as requiring additional documentation of past disciplinary actions and monitoring of compliance with requirements for urine drug screens and counseling.

What are states doing to improve care quality and treatment outcomes for OUD?

Most study states are adopting new models of care delivery for OUD. Realizing that navigating the continuum of addiction treatment services is complex, and merely covering MAT treatment will not necessarily lead to improved outcomes, most of the states are adopting new models of care delivery that emphasize evidence-based MAT treatment, coordination with the different levels of treatment, and integration with other physical and behavioral health services. For example, Pennsylvania established a Centers of Excellence program based on a “hub and spoke” model of treatment in 2016, in which the centers serve as the “hub” that provide the most intensive treatment services, while connecting patients with other services necessary for maintaining and managing their treatment over the longer term. State officials attribute a substantial increase in treatment rates to the Centers of Excellence. West Virginia is in the process of establishing a similar model, the Comprehensive Opioid Addiction Treatment (COAT) clinic. A second model is the preferred provider, as seen in Virginia’s Preferred Opioid-Based Opioid Treatment (OBOT) program. These providers, credentialed by the Medicaid program, have co-located buprenorphine-certified providers and behavioral health specialists. As preferred providers, they receive increased reimbursement to conduct care coordination activities and comprehensive services. A third model, used by Maryland and Ohio, is the medical home. While not OUD-specific, these medical homes are intended to provide or coordinate all physical health and behavioral health needs.

Most states have not yet adopted alternative payment models for OUD treatment services. While some of these new care delivery models include incentivizing providers to achieve better outcomes, use of alternative payment approaches for addiction treatment is still in the discussion phase for most states. Pennsylvania may be furthest along the path, having used bundled payment arrangements for methadone treatment for many years.

All six states are working to build the long-term infrastructure for collecting data and developing measures of quality to monitor outcomes. In some states, these include data linkages between Medicaid, Department of Corrections, Emergency Medical Services, prescription drug monitoring programs, mortality, and birth records to provide more timely and comprehensive monitoring of the opioid epidemic.

Most states were still seeing indications of a growing opioid epidemic through 2016. States use a variety of methods to measure treatment outcomes and the effects of treatment and state policies designed to increase access to and quality of treatment. While a widely-cited measure is overdose fatalities, this outcome represents only a small fraction of those afflicted with opioid use disorders. Other measures, such as opioid-related emergency department visits and acute inpatient stays, may reflect broader prevalence and access trends. As shown in Figure 5, the rate of ED visits for OUD nearly doubled between 2014 and 2016 among enrollees in the six states from 0.67 to 1.21 per 1,000 member months. The rate of inpatient admissions for OUD increased less sharply from 0.83 to 1.00 between 2014 and 2016. Among Medicaid enrollees, rates of ED and acute inpatient use for OUD tend to be higher among adults ages 21-44, males, whites, and residents of urban areas compared to other subpopulations (Table 3). Among Medicaid eligibility categories, OUD-related ED and inpatient use is highest among Medicaid expansion enrollees, pregnant women, and adults with disabilities and lowest among adolescents and young adults and traditionally eligible, non-disabled adults.

Looking Ahead

Medicaid programs are central to state efforts to address the opioid epidemic, in part due to the high prevalence of OUD among low-income populations eligible for Medicaid. Leaders in Medicaid agencies in all six study states viewed Medicaid expansion as important in expanding coverage to individuals with OUD to reduce financial barriers to treatment. State Medicaid programs also have a number of tools that can be used to leverage state and federal resources, such as by expanding coverage for the full range of treatment options, increasing reimbursement to attract more providers, developing new care delivery models, and seeking Section 1115 Demonstration Waivers that allow federal Medicaid payments for residential treatment. In addition, the federal SUPPORT Act allows for or mandates Medicaid services to treat OUD, puts in place protections for some eligibility groups to maintain Medicaid coverage, requires prescription drug oversight and quality reporting related to Medicaid and OUD, and authorizes new demonstrations to address provider capacity constraints and transitions from the criminal justice system, among other provisions.²³  This new federal law will likely expand Medicaid’s role in addressing OUD as states take up new options, implement demonstrations, or comply with federal requirements.

State Medicaid reforms are also integral to coordinated state strategies to address the opioid addiction crisis, especially in terms of aligning Medicaid restrictions on opioid prescribing with more general state and restrictions. Because effectively addressing opioid addiction overlaps with medical, public health, criminal justice, and social welfare sectors, state agencies are actively working with other state agencies on a coordinated response to the epidemic. The Kentucky Opioid Response Effort (KORE) is an example of a multi-agency effort to provide a comprehensive response to the opioid epidemic in the state, and provide grants to expand services. Other states have set up inter-agency task forces – a few of which are led by the state’s Medicaid agency — that meet on a regular basis to coordinate strategies and address issues related to treatment, housing, employment, and other social needs.

Many of these states have also leveraged new funding through SAMHSA, such as State Targeted Response (STR) and the newer State Opioid Response (SOR) grants to work in concert with Medicaid reforms to increase supply and availability of treatment providers, encourage and train more providers to become MAT prescribers, build crisis stabilization centers as an alternative to ERs and jails, conducting patient outreach and education to encourage them to begin and stay in treatment, and to reduce the stigma associated with MAT. State Medicaid agencies pointed to the need for long-term, coordinated strategies to improve systems of care to address not only the opioid crisis but other behavioral health needs among low-income, vulnerable populations.

Methods

Data Source

Data in this brief is from the Medicaid Outcomes Distributed Research Network (MODRN), an initiative of AcademyHealth.²⁴  MODRN is a collaborative effort to analyze data across multiple states to facilitate learning among Medicaid agencies. Participants from AcademyHealth’s State-University Partnership Learning Network (SUPLN) and the Medicaid Medical Director Network (MMDN) developed MODRN to allow states to participate in multi-state data analyses while retaining their own data and analytic capacity.

MODRN is composed of multiple organizations using a common data model to support centralized development, but local execution, of analytic programs. Under MODRN, each state-university partnership adopts the Medicaid Common Data Model, contributes to a common analytic plan, and conducts analyses locally on their own Medicaid data using standardized code developed by the data coordinating center. Finally, the state-university partners provide aggregate results, not data, to the data coordinating center, which synthesizes the aggregate findings from multiple states for reporting. The Medicaid Common Data Model will be continually updated and expanded for future Medicaid research projects.

Eleven university-state partnerships now participate in an effort to provide a comprehensive assessment of opioid use disorder treatment quality in Medicaid. The findings presented in this report resulted from that project that at the time of this writing had been implemented by six university participants include the University of Kentucky, University of Maryland Baltimore County, The Ohio State University, University of Pittsburgh, Virginia Commonwealth University, and West Virginia University.

Analytic Methods

Below we detail the construction of the variables used in the data analysis across the six study states.

Years Included

The data analysis covered years 2014 through 2016. Some measures pool data across two-year period per National Quality Forum Specifications.

Population Included

This analysis includes non-dual, full-benefit Medicaid enrollees age 12-64²⁵  with at least one month of Medicaid eligibility in the calendar year.

For analysis by eligibility category, we group enrollees into categories using the following hierarchy:

• Pregnant women, which includes any adolescents or women who are pregnant at any time in the calendar year. We identify women as pregnant during the year either by measuring the gestational period prior a claim for giving birth or by identifying a claim for prenatal care.
• Children, which includes those under the age of 21. In states using Medicaid as the basis of their Children’s Health Insurance Program, this group also includes children qualifying for Medicaid through Title XXI
• Adults age 21-64 qualifying due to receipt of Supplemental Security Income (SSI)
• Adults not qualifying on the basis of disability through a traditional (non-ACA expansion) category
• Adults qualifying through the ACA expansion category

Prevalence of Opioid Use Disorder (OUD)

We identify people with OUD based on diagnosis codes in claims. Specifically, we identify those who had at least one encounter with any diagnosis (counting all diagnosis fields) of OUD in inpatient, outpatient, or professional claims at any time during the measurement period. We used National Quality Forum code sets to identify diagnosis codes for measuring OUD.²⁶ 

Rates of Medication-Assisted Treatment (MAT) among Enrollees with OUD

After identifying the population with OUD as detailed above, we calculate utilization rates for MAT by identifying individuals with OUD who have at least one claim for medication-assisted treatment for OUD. Specifically, we include those who have at least one claim with a National Drug Code (NDC) or a HCPCS code for any of the following OUD medications during the measurement period:

• Buprenorphine
• Naltrexone (oral or injectable)
• Buprenorphine/Naloxone
• Methadone administration

We excluded claims for oral medications with negative, missing, or zero days’ supply.

Continuity of Pharmacotherapy for OUD

This measure is calculated for three rolling two-year periods from 2014 to 2016: 2014-2015, and 2015-2016, to allow for 180-day measurement of pharmacotherapy for enrollees whose treatment episodes span calendar years. For each two-year period, we limit the analysis to individuals who (1) had a diagnosis of OUD, as described above²⁷  (2) had at least one claim for an OUD medication, as described above, and (3) who are 18-63 years of age²⁸  for the duration of the first year during which they appear in the period. We only include individuals who received oral OUD medications during the two-year period with a date at least 180 days before the end of the final calendar year of the measurement period. Further, we only include individuals who were continuously enrolled in Medicaid for at least 6 months after the month with the first OUD medication claim in the measurement period, with no gap in enrollment. Individuals who are not enrolled for 6 months, including those who die during the period, are not eligible and are not included in this part of the analysis.

Within this group, we measure continuity of treatment by identifying individuals who have at least 180 days of continuous pharmacotherapy with a medication prescribed for OUD without a gap of more than seven days. We developed a set of decision rules for counting surplus for overlaps among prescription claims and for counting length of days for medications with different administration (e.g., prescription OUD medications, Naltrexone injections, and for licensed treatment center-dispensed methadone and office-dispensed buprenorphine/naloxone).²⁹ 

Emergency department use and inpatient hospitalizations for OUD

We measure emergency department (ED) visits for OUD as distinct ED visits with OUD diagnosis in any diagnosis field. For each enrollee, we consider a distinct combination of billing provider ID and date of service as a distinct ED visit. Similarly, we measure distinct inpatient hospitalization episodes with OUD diagnosis in any diagnosis field. We exclude detoxification and partial hospitalization and count direct transfers from one facility to another (discharge from one inpatient setting and admission to a second inpatient setting within one calendar day or less) as a single hospitalization.

To facilitate comparison of ED visit and inpatient hospitalization rates, we calculate visits/admissions per 1,000 member-months in the time period.

1. Kendal Orgera and Jennifer Tolbert. The Opioid Epidemic and Medicaid’s Role in Facilitating Access to Treatment. (Washington, DC: KFF), 2019. https://modern.kff.org/medicaid/issue-brief/the-opioid-epidemic-and-medicaids-role-in-facilitating-access-to-treatment/ ↩︎
2. Medicaid and CHIP Payment and Access Commission (MACPAC). Report to Congress on Medicaid and CHIP June 2017: Chapter 2- Medicaid and the Opioid Epidemic.; 2017. https://www.macpac.gov/wp-content/uploads/2017/06/Medicaid-and-the-Opioid-Epidemic.pdf. ↩︎
3. The brief includes the first findings from MODRN, a new initiative involving partnerships between state Medicaid agencies and universities conducting research and evaluation on the opioid epidemic and other public health issues facing their state’s Medicaid population (see Appendix for more detailed description of MODRN). To facilitate cross-state comparisons, MODRN employs a common data model to standardize estimates of OUD prevalence, treatment, and quality of care derived from state Medicaid claims and enrollment data. ↩︎
4. KFF analysis of 2017 National Survey of Drug Use and Health. ↩︎
5. Beth Han, Wilson M. Compton, Carlos Blanco, et al. “Prescription Opioid Use, Misuse, and Use Disorders in U.S. Adults: 2015 National Survey on Drug Use and Health.” Annals of Internal Medicine. 2017;167(5):293-301.  https://annals.org/aim/article-abstract/2646632/prescription-opioid-use-misuse-use-disorders-u-s-adults-2015?doi=10.7326%2fM17-0865 ↩︎
6. Virginia expanded Medicaid on January 1, 2019. ↩︎
7. Samantha Artiga, Barbara Dipietro, and Petry Ubri. The Role of Medicaid and Impact of the Medicaid Expansion for Veterans Experiencing Homelessness. (Washington, DC: KFF), 2017. http://files.kff.org/attachment/Issue-Brief-The-Role-of-Medicaid-and-Impact-of-the-Medicaid-Expansion-for-Veterans-Experiencing-Homelessness ↩︎
8. Brendan Saloner, Jonathan Levin, Hsien-Yen Change et al. “Changes in buprenorphine, naloxone, and opioid pain reliever prescriptions after the Affordable Care Act Medicaid Expansion.” JAMA Network Open 2018; 1(4). ↩︎
9. Michael Linden, Sam Marullo, Curtis Bone et al. “Prisoners as Patients: The Opioid Epidemic, Medication-Assisted Treatment, and the Eighth Amendment.” J Law, Med Ethics. 2018;46:252-267. ↩︎
10. Jesse Jannetta, Jane B, Wishner, and Rebecca Peters. Medicaid Areas of Flexibility to Provide Coverage and Care to Justice-Involved Populations. (Washington, DC: The Urban Institute): 2017. https://www.urban.org/sites/default/files/publication/88051/ohio_medicaid_1.pdf ↩︎
11. Kathleen Gifford, Eileen Ellis, Aimee Lashbrook, et al. A View from the States: Key Medicaid Policy Changes: Results from a 50-State Medicaid Budget Survey for State Fiscal Years 2019 and 2020. (Washington, DC: KFF), October 2019. https://modern.kff.org/medicaid/report/a-view-from-the-states-key-medicaid-policy-changes-results-from-a-50-state-medicaid-budget-survey-for-state-fiscal-years-2019-and-2020/ ↩︎
12. ibid. ↩︎
13. Yaou Sheng, Peter Cunningham, Augustus White, et al. Opioid Prescribing for Medicaid Members Drops Sharply After 2016. VCU Health Behavior and Policy ARTS Evaluation, January 2019. https://hbp.vcu.edu/media/hbp/policybriefs/pdfs/HBP_ARTSIssue03_012919.pdf ↩︎
14. These services range from outpatient treatment and counseling (ASAM 1.0), intensive outpatient treatment (ASAM 2.0), short-term residential treatment (ASAM 3.0) and inpatient detoxification (ASAM 4.0). American Society of Addiction Medicine. https://www.asam.org/resources/guidelines-and-consensus-documents/npg/complete-guideline. ↩︎
15. MaryBeth Musumeci, Priya Chidambaram, and Kendal Orgera. State Options for Medicaid Coverage of Inpatient Behavioral Health Services. (Washington, DC: KFF), November 2019. https://modern.kff.org/report-section/state-options-for-medicaid-coverage-of-inpatient-behavioral-health-services-report/ ↩︎
16. Peter Cunningham, Andrew Barnes, Yaou Sheng, et. al. Addiction and Recovery Treatment Services Access and Utilization during the First Year (April 2017 – March 2018). VCU Health Behavior and Policy ARTS Evaluation, August 2018. https://hbp.vcu.edu/media/hbp/policybriefs/pdfs/ARTSone-yearreport_8.9.18_Final.pdf ↩︎
17. Substance Abuse and Mental Health Services Administration. Medication-Assisted Treatment (MAT) September, 2019. https://www.samhsa.gov/medication-assisted-treatment ↩︎
18. National Institute on Drug Abuse, Medications to Treat Opioid Use Disorder. June 2018. https://www.drugabuse.gov/publications/research-reports/medications-to-treat-opioid-addiction/efficacy-medications-opioid-use-disorder ↩︎
19. Gifford, Ellis, Lashbrook, et al, op. cit. ↩︎
20. Substance Abuse Center for Behavioral Health Statistics and Quality. Results from the 2016 National Survey on Drug Use and Health: Detailed Tables. SAMHSA. https://www.samhsa.gov/data/sites/default/files/NSDUH-DetTabs-2016/NSDUH-DetTabs-2016.htm. Published September 7, 2017. ↩︎
21. Kayla Holgash and Martha Heberlein. “Physician Acceptance of New Medicaid Patients: What Matters and What Doesn’t.” Health Affairs Blog. April 10, 2019. https://www.healthaffairs.org/do/10.1377/hblog20190401.678690/full/ ↩︎
22. For more information on ECHO, see: https://echo.unm.edu/ ↩︎
23. MaryBeth Musumeci and Jennifer Tolbert. Federal Legislation to Address the Opioid Crisis: Medicaid Provisions in the SUPPORT Act. (Washington, DC: KFF), October 2018. https://modern.kff.org/medicaid/issue-brief/federal-legislation-to-address-the-opioid-crisis-medicaid-provisions-in-the-support-act/ ↩︎
24. For more information on MODRN, see: https://www.academyhealth.org/MODRN ↩︎
25. Enrollees who age in (i.e., turn 12 at some point during the year) or age out (i.e., turn 65 at some point in the calendar year) of the age range included in the analysis are not included in the analysis for that year. ↩︎
26. These codes included: ICD-9: 304.0x, 305.5x and ICD-10: F11.xxx. ↩︎
27. Instead of identifying and limiting to outpatient setting, acute inpatient setting, or emergency department setting as in NQF’s specification, we use all inpatient, outpatient, and professional files in MCDM to identify beneficiaries with an OUD diagnosis. ↩︎
28. NQF’s age criteria is 18-64 years of age for the duration of the first year during which they appear in the period. We modified the age criteria to ≥18 years of age in the beginning of the first year, and <64 at the end of the first year. In other words, we would only include beneficiaries who would be <65 years of age by the end of the second year. ↩︎
29. Decision rules and details are available upon request. ↩︎

During the Medicare open enrollment period from October 15 to December 7 each year, beneficiaries can enroll in a plan that provides Part D drug coverage, either a stand-alone prescription drug plan (PDP) as a supplement to traditional Medicare, or a Medicare Advantage prescription drug plan (MA-PD), which covers all Medicare benefits, including drugs. Among the 45 million Part D enrollees in 2019, 20.6 million (46%) are in PDPs (excluding employer-only group PDPs). This issue brief provides an overview of PDPs that will be available in 2020 and highlights key changes from prior years.

Key Findings

• The average Medicare beneficiary will have a choice of 28 PDPs in 2020, one more PDP option than in 2019, and six more than in 2017, a 29% increase. A total of 948 PDPs will be offered in the 34 PDP regions in 2020 (plus another 11 PDPs in the territories), an increase of 202 PDPs since 2017.
• PDP premiums will vary widely across plans in 2020, as in previous years (Figure 1). Among the 20 PDPs available nationwide, average premiums will range sixfold from a low of $13 per month for Humana Walmart Value Rx Plan to a high of $83 per month for Express Scripts Medicare Choice.

• Two-thirds of Part D enrollees without low-income subsidies (9.0 million enrollees) will see their monthly premium increase in 2020 if they stay in their same plan, while one-third (4.3 million) face premium decreases. As an example, the 1.9 million enrollees without low-income subsidies in the Humana Walmart Rx Plan, the third most popular PDP in 2019, will see their monthly premium double in 2020, from $28 to $57, unless they switch plans. This is due to plan changes and consolidations, with Humana consolidating two of its PDPs (Humana Walmart Rx and Humana Enhanced) into one PDP for 2020 and renaming it Humana Premier Rx, with a $57 monthly premium.
• The estimated national average monthly PDP premium for 2020 is projected to increase by 7% to $42.05, weighted by September 2019 enrollment. The actual average premium in 2020 may be lower if current enrollees switch to, and new enrollees choose, lower-premium plans during open enrollment.
• In 2020, all PDPs will have a benefit design with five or six tiers for covered generic, brand-name, and specialty drugs, and cost sharing other than the standard 25% coinsurance, similar to 2019. More than eight in 10 PDPs (86%) will charge a deductible, with most PDPs charging the standard deductible of $435 in 2020.
• Among all PDPs, median cost sharing is $0 for preferred generics and just $3 for generics, but $42 for preferred brands and 38% coinsurance for non-preferred drugs (the maximum allowed is 50%), plus 25% for specialty drugs (the maximum allowed is 33%).
• Medicare beneficiaries receiving the Low-Income Subsidy (LIS) will have a choice of seven premium-free PDPs in 2020, on average, one more than in 2019. In 2020, nearly 20% of all LIS PDP enrollees who are eligible for premium-free Part D coverage (1.3 million LIS enrollees) will pay Part D premiums averaging $18 per month unless they switch or are reassigned by CMS to premium-free plans.

Findings

Part D Plan Availability

A larger number of Part D plans will be offered in 2020 than in recent years.

• The average beneficiary will have a choice of 28 PDPs in 2020, one more PDP option than in 2019 and six more than in 2017 (a 29% increase) (Figure 2). Although the number of PDP options in 2020 is half of what it was at the peak in 2007 (when there were 56 PDP options, on average), this is the third year in a row with an increase in the average number of stand-alone drug plan options. In 2020, beneficiaries will also have access to 24 MA-PDs, on average, a 44% increase in MA-PD options since 2017 (excluding MA plans that do not offer the drug benefit; overall, an average of 28 MA plan options will be available in 2020).

• A total of 948 PDPs will be offered in the 34 PDP regions in 2020 (plus another 11 PDPs in the territories), an increase of 47 PDPs (5%) over 2019, and 202 more PDPs (a 27% increase) since 2017 (Figure 3). This increase is primarily due to the elimination of the “meaningful difference” requirement for enhanced benefit PDPs offered by the same organization in the same region. Eliminating this requirement means that PDP sponsors no longer have to demonstrate that their enhanced PDPs offered in the same region are meaningfully different in terms of enrollee out-of-pocket costs. In 2020, 60% of PDPs (566 plans) will offer enhanced Part D benefits—a 46% increase in the availability of enhanced-benefit PDPs since 2017, when just over half of PDPs (387 plans) offered enhanced benefits.

• The number of PDPs per region in 2020 will range from 24 PDPs in Alaska to 32 PDPs in California, and will be the same or higher in 32 of the 34 PDP regions compared to 2019 (see map; Table 1).
• In 2020, nearly nine out of 10 PDP enrollees (88%) are projected to be in PDPs operated by five firms: UnitedHealth, Humana, WellCare, CVS Health, and Cigna (based on PDP enrollment as of September 2019). All five firms offer PDPs in all 34 PDP regions in 2020.

.Premiums

National Premium Trends

The estimated national average monthly PDP premium is expected to increase by 7% to $42 in 2020.

• The estimated average monthly PDP premium for 2020 is projected to be $42.05, weighted by September 2019 enrollment (Figure 4). The 2020 premium estimate represents a 7% increase ($2.92) from the weighted average monthly premium of $39.13 in 2019. It is likely that the actual average weighted premium for 2020, after taking into account enrollment choices by new enrollees and plan changes by current enrollees, will be somewhat lower than the estimated average.

• Since 2006, the first year of the Medicare Part D drug benefit, the weighted average monthly premium for PDPs has increased by 62%, but much of the increase occurred between 2006 and 2011; since then, the average monthly premium has been relatively stable, between $37 and $41.
• Two-thirds of the 13.3 millionPart D PDP enrollees who are responsible for paying the entire premium (which excludes Low-Income Subsidy (LIS) recipients) (67%, or 9.0 million enrollees) will see their monthly premium increase if they remain in their current plan in 2020, while one-third (32%, or 4.3 million enrollees) will see a premium reduction if they stay in the same plan (Figure 5). Twenty percent of non-LIS enrollees, or 2.7 million enrollees, will see a premium increase of $10 or more per month; 0.9 million non-LIS enrollees (7%) will see a premium reduction of the same magnitude.

• About three in 10 (29%) non-LIS enrollees (3.8 million) are projected to pay monthly premiums of at least $60 if they stay in their current plans. More than 215,000 (2% of non-LIS enrollees) are projected to pay monthly premiums of at least $100.
• CMS reported that the average premium for basic Part D coverage offered by PDPs and MA-PDs will be an estimated $30 in 2020. Our premium estimate is higher because it is based on PDPs only and includes PDPs offering both basic and enhanced coverage (enhanced plans have higher premiums than basic plans, on average). In contrast, the CMS estimate includes MA-PDs and excludes plans offering enhanced coverage. In addition, our premium estimates are weighted based on current enrollment and do not incorporate any assumptions about plan changes by current enrollees, reassignment of Low-Income Subsidy enrollees by CMS, or plan choices by new enrollees.
• In prior years, the average premium that we have calculated after taking into account enrollment changes made during the open enrollment period and subsequent months has been somewhat lower than our projection based on current enrollment. For example, the weighted average premium calculated in September 2019 was $39.13, 5% ($2.08) below the projected premium for 2019 of $41.21 calculated prior to enrollment changes. The reduction is due to current enrollees switching to lower premium plans, new enrollees choosing low-premium plans, and reassignment of some LIS beneficiaries to lower-premium plans.

Premium Variation and Changes for National PDPs

PDP premiums will continue to vary widely across plans in 2020, as in previous years.

• Among the 20 PDPs available nationwide in 2020, average premiums will range sixfold, from a low of $13 per month for Humana Walmart Value Rx Plan to a high of $83 per month for Express Scripts Medicare Choice (Figure 1; Table 2).

Changes to premiums from 2019 to 2020, averaged across regions and weighted by September 2019 enrollment, also vary widely across PDPs, as do the absolute amounts of monthly premiums for 2020.

• The 2.1 million non-LIS enrollees in the largest PDP, CVS Health’s SilverScript Choice (which had a total of 4.4 million enrollees in 2019, including those receiving low-income subsidies) will face a $2 (7%) decrease in their average monthly premium, from $31 in 2019 to $29 in 2020.
• In contrast, the 2.0 million non-LIS enrollees in the second largest PDP, AARP MedicareRx Preferred, will face a $4 (6%) increase in their average monthly premium between 2019 and 2020, from $75 to $79. This is the second highest monthly premium among the national PDPs in 2020.
• Plan changes and consolidations will affect the premiums paid by many current enrollees in Humana’s PDPs. For 2020, Humana is consolidating two of its PDPs (Humana Walmart Rx and Humana Enhanced) into one PDP and renaming it Humana Premier Rx. It is also renaming Humana Preferred Rx to Humana Basic Rx, and introducing an entirely new PDP, Humana Walmart Value Rx Plan.
  • The weighted average monthly premium for Humana Premier Rx will be $57 in 2020. For the 1.9 million non-LIS enrollees in the Humana Walmart Rx plan (the third most popular PDP in 2019) who will be automatically enrolled in Humana Premier Rx, the monthly premium will more than double, from $28 to $57, if they do not switch plans for 2020 (Figure 6). Beneficiaries enrolled in Humana Walmart Rx in 2019 will not be automatically enrolled in the new Humana Walmart Value Rx plan, which has a substantially lower premium ($13 per month); they will have to switch during the open enrollment period if they want this lower-premium plan option.
  • Conversely, the 0.6 million non-LIS enrollees in Humana Enhanced who will also be enrolled automatically in the consolidated plan, will see a 25% reduction in their monthly premium, from $76 to $57, if they remain enrolled in the Humana Premier Rx Plan for 2020.

Premium Variation by Region

Average PDP monthly premiums for 2020 will vary across the 34 PDP regions, from $33 in Hawaii to $49 in New Jersey (see map; Table 1).

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• All 34 PDP regions have at least one PDP with a premium under $20. For example, the new Humana Walmart Value Rx Plan is available in all regions with a monthly premium of $13.20, while the new WellCare Wellness Rx PDP is available nationwide with premiums ranging from $13.10 to $15.70. At the high end, seven PDPs, with a total of 100,000 enrollees in 2019 (less than 1% of total PDP enrollment), have monthly premiums of at least $125. The highest is $191.40 for BlueCross Rx Plus PDP, which is offered in the South Carolina region.
• Average premiums are projected to be higher in 33 out of 34 regions, increasing by between $1 and $6 in 32 out of 34 regions. In California, the average premium will decrease by less than $1 from the 2019 average, while in Virginia, the average premium will increase by less than $1 from the 2019 average.

Benefit Design and Cost Sharing

In 2020, all PDPs will offer an alternative benefit design, different from the defined standard benefit, which has a $435 deductible (an increase from $415 in 2019) and 25% coinsurance for all covered drugs between the deductible and the initial coverage limit. Part D plans can also provide enhanced benefits, including a lower (or no) deductible, reduced cost sharing, and/or a higher initial coverage limit than under the standard benefit design.

In 2020, all PDPs will have a benefit design with five or six tiers for covered generic, brand-name, and specialty drugs and cost sharing other than the standard 25% coinsurance. As of 2020, Part D enrollees will no longer be exposed to a coverage gap, sometimes called the “doughnut hole,” when they fill their prescriptions; coinsurance in the coverage gap phase will be 25% for both brands and generics.

Basic versus Enhanced Benefits

• In 2020, 60% of PDPs, or 566 plans (excluding plans in the territories), will offer enhanced benefits, an increase in the number of enhanced-benefit PDPs compared to prior years (Table 3). As noted earlier, this increase is a response by Part D plan sponsors to the elimination of the requirement to demonstrate a “meaningful difference” (measured by enrollee out-of-pocket costs) between enhanced plans offered by the same firm in the same region. The overall share of PDPs offering basic Part D benefits in 2020 is roughly the same as in 2019 (40%), but the number of basic-benefit plans in 2020 will be higher than in 2019 (382 vs. 348). As in recent years, no plans will offer the defined standard benefit.
• The average premium in 2020 for enhanced benefit PDPs ($57) is 85% higher than the monthly premium for PDPs offering the basic benefit ($31) (weighted by September 2019 enrollment).

Deductibles

• The number and share of PDPs that charge a deductible is increasing, from 71% in 2019 to 86% in 2020 (Table 3). A larger share of PDPs (69%) will charge the standard deductible in 2020 than in 2019 (52%). The standard deductible amount is $435 in 2020; the average deductible is increasing by nearly $100 between 2019 and 2020, from $238 to $335 (weighted by September 2019 enrollment).
• There are some notable changes in deductibles among the national PDPs for 2020.
  • In 2020, only two of the 20 national plans will charge no deductible in all regions (AARP MedicareRx Preferred and WellCare Medicare Rx Value Plus), down from five national PDPs that charged no deductible in all or most regions in 2019.
  • Enrollees in SilverScript Choice paid no deductible in 28 out of 34 regions in 2019, but in 2020, enrollees in this plan will pay deductibles ranging by region from $215 to $435 (the maximum deductible amount).
  • Enrollees in Humana Enhanced paid no deductible in 2019, but those who remain in the new Humana Premier Rx plan in 2020 will be charged the standard $435 deductible in 33 out of 34 regions.
  • In contrast to these increases, enrollees in Express Scripts Medicare Choice will see a reduction in their deductible, from $350 in 2019 to $250 in 2020.
• The average premium in 2020 for PDPs that charge no deductible ($81) is more than double the monthly premium for PDPs that charge the standard deductible ($36) or a partial deductible ($32) (weighted by September 2019 enrollment).

Cost Sharing

• As in recent years, all PDPs in 2020 will use tiered cost sharing. The typical five-tier design includes tiers for preferred generics, generics, preferred brands, non-preferred drugs (which includes both brands and generics), and specialty drugs. Five-tier formularies have been the most common type since 2013. Part D enrollees will face modest cost-sharing amounts for generic drugs in 2020 but much higher cost sharing for brands and non-preferred drugs, and a mix of copayments and coinsurance for different formulary tiers (Figure 7).

• Overall, PDP cost-sharing amounts in 2020 are relatively similar to 2019 levels (Table 4). For generic tiers, median copayments across all PDPs are $0 for the preferred generic tier and $3 for the generic tier in 2020.
  • Nine of the 20 national PDPs, including the largest PDP (SilverScript Choice), have a $0 copayment for preferred generic drugs in 2020. Median copayments for generics range from $1 to $10 among the 20 national PDPs; most charge $5 or less for generics.
• Most PDPs charge copayments for preferred brand tiers, but nearly one in 10 PDP enrollees (9%) will be in plans that charge coinsurance in 2020 (based on September 2019 enrollment). For preferred brand tiers, the median copayment in 2020 is $42; the median coinsurance rate is 25%.
  • Of the 18 national PDPs that charge copayments for preferred brands, the amounts range from $25 to $47; 11 of these 18 PDPs charge $40 or more, including four that charge $47 (Humana Walmart Value Rx Plan. SilverScript Choice, WellCare Medicare Rx Select, and WellCare Medicare Rx Value Plus).
• Virtually all PDPs are using coinsurance for the non-preferred drug tier in 2020. The median coinsurance PDPs charge for non-preferred drugs in 2020 is 38%.
  • Among the 20 national PDPs, coinsurance for non-preferred drugs in 2020 varies from 32% (AARP MedicareRx Walgreens) to 50% (Cigna-HealthSpring Rx Secure-Extra), the maximum allowed for this tier by CMS guidelines (which is higher than the maximum coinsurance allowed for specialty drugs). Half of the national PDPs (10) charge 40% or more for non-preferred drugs.
• Specialty tier coinsurance ranges from 25% to 33% for all PDPs, the maximum allowed by CMS guidelines. Most (15) of the national PDPs charge 25% for specialty tier drugs in 2020; two charge 33%. In 2020, the threshold for drugs to qualify for placement on a specialty tier is $670 for a one-month supply of the drug, the same amount since 2017.

Low-income Subsidy (Benchmark) Plans

In 2020, a larger number of PDPs will be premium-free benchmark plans—that is, PDPs available for no monthly premium to beneficiaries receiving the Low-Income Subsidy (LIS)—than in recent years.

• On average (weighted by Medicare enrollment), LIS beneficiaries have seven benchmark plans available to them for 2020, or one-fourth the average number of PDP choices available overall. All LIS enrollees can select any plan offered in their area, but if they enroll in a non-benchmark plan, they must pay some portion of their chosen plan’s monthly premium.
• In 2020, a total of 244 PDPs will be premium-free benchmark plans. This number represents roughly a quarter of all PDPs in 2020. The number of benchmark plans in 2020 is 29 more than in 2019 (a 13% increase) and the largest number of benchmark plans available to LIS enrollees since 2015 (Figure 8, Table 1).

• Of the 244 benchmark plans in 2020, 53 plans qualify through the “de minimis” policy, close to twice the number in 2019 (29). The de minimis policy makes it easier for plans to qualify as benchmark plans and retain their current LIS enrollees by allowing them to waive a premium amount of up to $2 above the regional LIS benchmark. Although benchmark plans that qualify through the de minimis policy can keep their existing LIS enrollees, they cannot receive auto-assigned enrollees. This means that only 191 PDPs in 2020 (20% of all PDPs, or 78% of all benchmark plans) are eligible for auto-assignment.

Benchmark Plans by Region

• The number of benchmark plans available in 2020 will vary by region, from just two benchmark PDPs in Ohio (out of 28 PDPs overall) to 12 benchmark PDPs in Arizona (out of 31 PDPs) (see map; Table 1). Benchmark plan availability will be the same or higher in 32 of 34 regions between 2019 and 2020.

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• In 2020, 95% of LIS PDP enrollees are projected to be in PDPs operated by five firms: CVS Health, WellCare, Humana, UnitedHealth, and Cigna (based on enrollment as of September 2019). All five sponsors offer PDPs that qualify as benchmark plans in all 34 PDP regions in 2020.

Impact of Benchmark Plan Changes for Low-Income Subsidy Enrollees

• More than one million LIS beneficiaries—1.3 million, or nearly 20% of LIS enrollees in PDPs—are enrolled in PDPs in 2019 that will not qualify as benchmark plans in 2020 (Figure 9). CMS will reassign these LIS beneficiaries to another plan if they were randomly assigned to their current plan, but those who have chosen their current plan must switch on their own to avoid paying a premium if they remain in their 2019 plan.

• These 1.3 million LIS beneficiaries face monthly PDP premiums that average $18 if they remain in their current plan for 2020. More than 200,000 of these LIS beneficiaries are enrolled in the AARP MedicareRx Preferred PDP, and they will pay a monthly premium of more than $47, on average, if they stay in this PDP for 2020.

Discussion

Our analysis of the Medicare Part D stand-alone drug plan landscape for 2020 shows that millions of Part D enrollees without low-income subsidies will face premium and other cost increases in 2020 if they stay in their current stand-alone drug plan. There are more plans available nationwide in 2020, with Medicare beneficiaries having nearly 30 PDP choices during this year’s open enrollment period. Most Part D enrollees will be in a plan with the standard $435 deductible and will face low copayments for generic drugs but substantially higher costs for brands, including as much as 50% coinsurance for non-preferred drugs.

Some Part D enrollees who choose to stay in their current plans may see lower premiums and other costs for their drug coverage, but two-thirds of non-LIS enrollees will face higher premiums if they remain in their current plan, and many will also face higher deductibles and cost sharing. As in prior years, all Part D enrollees could benefit from the opportunity to compare plans during open enrollment, since plans vary in a number of ways that can have a significant effect on an enrollee’s out-of-pocket spending.

In the spring and summer of 2019, KFF, working with Health Management Associates, conducted interviews with clinicians, social service providers, community-based organizations, researchers, and health care advocates, as well as a focus group with low-income women in five “medically underserved” communities. Based on the interviews and focus groups, the study addresses how national, state, and local policies, as well as cultural factors, shape access to contraceptive care, sexually transmitted infection prevention and treatment, obstetrical care, and abortion services.

EXECUTIVE SUMMARY

• The Executive Summary provides an overview of the major findings and cross-cutting themes, and is available under the Executive Summary tab.

CASE STUDIES

• In-depth case studies of each of the five communities are available under the Case Studies tab or by clicking on each one below.
  • Dallas County (Selma), Alabama
  • Tulare County, California
  • St. Louis, Missouri
  • Crow Tribal Reservation, Montana
  • Erie County, Pennsylvania

NEWS RELEASE

• A news release announcing the publication of Beyond the Numbers: Access to Reproductive Health Care for Low-Income Women in Five Communities is available here.

BRIEFING

• On Thursday, November 14, 2019, KFF held a briefing to release Beyond the Numbers: Access to Reproductive Health Care for Low-Income Women in Five Communities. A recording of the event and presentation slides are available here.

KFF: Usha Ranji, Michelle Long, and Alina SalganicoffHealth Management Associates: Sharon Silow-Carroll, Carrie Rosenzweig, Diana Rodin, and Rebecca Kellenberg

Introduction

In Washington, DC, and in state capitols across the nation, policy debates over the future of access to reproductive and sexual health services are shaping the range of services and providers available to low-income women. Access to these services, including contraceptive care, sexually transmitted infection (STI) prevention and treatment, obstetrical care, and abortion services, have a profound impact on women’s lives. While instructive, national statistics can mask wide regional and local variation, as well as disparities across socioeconomic, racial, and ethnic groups. In order to understand what is happening at the local level, we went beyond the statistics to see how these policies are playing out in diverse communities across the United States.

Service availability and policies related to health care, contraception, and abortion vary significantly across and within states. State policymakers determine whether to expand Medicaid coverage to low-income adults under the Affordable Care Act (ACA), establish and fund family planning programs for uninsured residents, and adopt rules that regulate abortion services. These state policies also intersect with local factors; the number and distribution of family planning and safety net providers, the content of school-based sex education, cultural traditions of local populations, and underlying social determinants of health all shape access to reproductive health care at the community level.

Shifting federal policies and priorities add to already complex state and local dynamics. New federal rules related to the Title X family planning program, for example, directly affect which organizations can receive funding to provide family planning services to low-income and uninsured women, and indirectly affect the availability of other basic health services.

Recognizing the large disparities in access to health care across the country and the importance of the local safety net for low-income populations, KFF, working with Health Management Associates (HMA), undertook a study to identify distinct challenges that low-income women face in obtaining reproductive health care in diverse communities. The research team examined access in five communities across the United States that represent urban and rural areas, regions that are federally designated as medically underserved and health professional shortage areas, and areas that have faced closure and consolidation of family planning providers and hospitals. These communities also vary in demographic characteristics, and have populations that face health inequities such as low-income women, African Americans, Native Americans, immigrants, and refugees. The study team went to: Dallas County (Selma), Alabama; Tulare County, California; St. Louis, Missouri; Crow Tribal Reservation, Montana; and Erie County, Pennsylvania. Between February and September 2019, staff from KFF and HMA conducted structured interviews with local safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates (“interviewees”) that work on a range of reproductive and sexual health issues in each of the communities. Additionally, at each site we convened a focus group with low-income, reproductive age women to understand their perspectives on the care they receive and the challenges they face. Through this combination of interviews and focus groups, we learned about the experiences of women living in these communities and the reproductive health professionals caring for them.

This report summarizes the major findings, highlighting cross-cutting themes and the degree to which low-income women in diverse communities face challenges in accessing reproductive and sexual health care. We also report on promising initiatives established by community providers to address barriers and improve access to these basic services. In-depth case studies of each community are available at https://www.kff.org/womens-health-policy/report/beyond-the-numbers-access-to-reproductive-health-care-for-low-income-women-in-five-communities.

Key Findings

Despite their differences, low-income women in these communities faced many similar challenges in accessing health care. While each community had distinct environments and features, the barriers to reproductive health services and factors contributing to those barriers were largely consistent, suggesting that these challenges and themes are prevalent well beyond the five communities studied. The key findings are categorized into five areas:

• Cultural and Social Determinants of Health: In each of the communities, poverty, cultural factors, and social determinants were identified as having a considerable impact on women’s ability to prioritize, afford, and get to family planning or abortion services. In addition, the residual effects of historical abuses by the medical establishment result in persistent mistrust of providers in some communities. This was most prominent among the Crow tribe and residents of Dallas County, AL; both communities still feel the legacy of a history of injustices such as forced sterilization upon many Native American women and the Tuskegee syphilis study in a neighboring community in Alabama.
• Coverage: Interviewees identified lack of coverage options for basic health care services for low-income women as a prominent challenge in states that did not adopt the ACA’s Medicaid expansion. Interviewees also identified ways to strengthen Medicaid to improve services available to enrollees, such as eliminating pre-authorization for certain contraceptive methods, increasing provider participation in the program, and improving systems to connect uninsured women to Medicaid-funded family planning programs.
• Provider Supply and Distribution: There are provider shortages in many communities, especially in expansive, rural areas. Interviewees said that challenges with recruitment and retention of clinical staff create access barriers for women. Many interviewees identified gaps in the availability of female clinicians, language translation services, and the need for culturally-congruent care.
• Sex Education: All five communities emphasized the need for comprehensive sex and STI education. A lack of information was said to leave many girls and women uninformed or misinformed about their reproductive health care, contraceptive options, and how to access services.
• Abortion Environment: Abortion was difficult to access in all of the communities. Stigma, anti-abortion beliefs, and policy restrictions at the state and/or community level shape the accessibility of abortion services. Policy restrictions, such as those in Missouri, Alabama, and Pennsylvania, that mandate counseling and waiting periods and bar insurance coverage for abortions dissuade providers from offering services and raise costs for women. Anti-abortion beliefs and stigma were also raised as barriers in Montana and California, states that don’t impose these types of abortion restrictions.

The discussion below highlights perspectives and lessons learned from health care providers, leaders of local support agencies, and low-income women about key barriers as well as how to improve access to reproductive health services.

Cultural and Social Determinants of Health

Despite the differences in the racial and ethnic composition of the populations, local histories, and state-level policies, this theme was prominent and overarching in all five communities. Increasingly, policymakers, advocates, payors, and providers are acknowledging the impact of social determinants such as housing instability, food insecurity, limited education and job training, crime and violence, and unmet transportation needs on health care access and outcomes. For example, a growing number of states are requiring Medicaid health plans to address social determinants of health as part of contractual agreements. Still, unmet needs related to poverty continue to create significant barriers to reproductive care. The increase in anti-immigrant sentiment and ICE raids, as well as long-standing discriminatory practices and negative historical experiences with the health care system, not only affect access to reproductive health services but also utilization and quality of health and social services.

Erie County, Pennsylvania

Located in northwestern Pennsylvania on the shore of Lake Erie, Erie County has one large city (Erie), several smaller communities, and a significant rural population. It has a relatively large population of refugees and immigrants. The Roman Catholic Diocese of Erie and the large Catholic population in the region influence both the health care and educational systems.

Poverty, a shortage of affordable housing, and lack of education and employment opportunities leave many women struggling to meet basic needs and with few resources to seek reproductive health services. Interviewees in all regions reported that socioeconomic stresses often result in women prioritizing food and shelter above preventive health care and family planning. One interviewee noted that multi-generational poverty locks women in situations that prevent them from making their own choices. Anxiety and depression are common among low-income women, yet all five communities faced gaps in behavioral health care and related support services.

Immigration status affects women’s willingness and ability to seek family planning, health, and social services. Immigrants who are undocumented or who are not proficient in English face heightened challenges in seeking services due to language barriers, fear of deportation, or concerns about jeopardizing their immigration proceedings due to changes in the public charge rule. Interviewees in Tulare and Erie Counties, both communities with sizable immigrant populations, reported that racism and fear of ICE have increased in recent years. In Tulare County, interviewees noted there have been ICE raids on domestic violence shelters across California and said that women who call to report abuse may not seek services for fear of deportation. Several focus group participants recounted experiences delaying or going without health or pregnancy-related care when they were undocumented.

Trauma, prior negative experiences with the health care system, and lack of cultural competency among providers discourage women from accessing reproductive care. Some focus group participants reported that health care providers pressured them to use contraception or to choose certain methods. Others reported providers dissuading them from using particular types of contraception – sometimes based on outdated research and practices or personal attitudes about ideal family size or the age of the patient. In each community, different cultural and historical factors interacted with access to reproductive health care:

Crow Tribal Reservation, Montana

The Crow reservation, located about 60 miles southeast of Billings, is the geographically largest American Indian reservation in Montana and home to about 8,000 members of Crow Nation. The Crow Tribal Council governs the Nation and Indian Health Services (IHS) is responsible for providing health services, although other coverage options and providers are also utilized. The reservation has high unemployment and poverty rates.

• Refugee communities – In Erie, Pennsylvania, interviewees explained that reproductive health and family planning preferences vary widely among the large refugee community, reflecting diverse religious and cultural beliefs. While many refugees face language barriers when seeking care, case managers, dedicated service agencies, and a Federally Qualified Health Center (FQHC) focus on providing culturally appropriate care to support women’s access to their preferred methods of family planning.
• African Americans in the rural south – In Selma, Alabama, some interviewees reported that the legacy of slavery and the Jim Crow era, historical mistrust of the medical establishment (exacerbated by the Tuskegee syphilis study in nearby Macon county), and an insufficient number of female clinicians of color contribute to lack of engagement in early and preventive care. Focus group participants and interviewees also noted the influence of conservative religious beliefs among many in the community, particularly with regard to sex outside of marriage and abortion.
• Crow tribe – Crow interviewees in Montana described traditional beliefs that emphasize modesty, discourage the discussion of sexuality-related topics, and hold that babies are always a blessing. These beliefs, along with historical negative experiences with the federal and state health care systems, such as the coerced sterilization of indigenous women in the 1960s and 1970s, affect utilization of family planning services among Crow women and teens.

Domestic violence interacts with sexual health. Several interviewees reported that women in abusive relationships often experience reproductive coercion in which their partners prevent them from using contraception or sabotage their chosen method. As a result, women are not able to make their own reproductive decisions, and some have had multiple children they did not intend to have.

Availability of Coverage

Thirty-six states plus DC have expanded Medicaid coverage to low-income adults without dependent children under the Affordable Care Act. In states that have not expanded their Medicaid programs, these adults generally do not qualify for full-scope Medicaid coverage.¹  While Medicaid income eligibility levels for pregnant women in all states are higher than for people who are not pregnant, pregnancy-related coverage typically ends at 60 days postpartum. Two of the five communities in this study, St. Louis, Missouri, and Dallas County, Alabama, are in states that have not expanded Medicaid. As a result, they have lower rates of Medicaid coverage than the other three communities, which are located in expansion states.

Figure 1 shows the insurance coverage profile of reproductive age women in Tulare County, the St. Louis region, and Erie County. Comparable estimates were not available for Dallas County and the Crow tribal reservation. All of the communities that were studied are in states with a Medicaid-funded family planning program that provides contraception to uninsured, low-income women, except Missouri, which offers an entirely state-funded program.² 

Women in states that did not expand Medicaid have limited options for obtaining coverage for basic health care services. Interviewees in St. Louis, Missouri, and Dallas County, Alabama, both in non-expansion states, reported that most low-income women have no coverage for preventive, acute, or chronic care outside of pregnancy (Figure 2). Annual income eligibility for parents in a family of three is capped at $3,839 (18% FPL) in Alabama and $4,479 (21% FPL) in Missouri. Parents with incomes above these limits do not qualify for coverage. Adults without children in these states do not qualify for Medicaid regardless of income, unless they have a disability or are over age 65. Additionally, federally subsidized coverage through the ACA’s Health Insurance Marketplace is only available to those with incomes above the federal poverty level. This means many of these individuals are not eligible for financial assistance to purchase coverage on their own, creating a coverage gap. Many focus group participants in Dallas County reported that when they need health care, they go to the emergency room, where they are not required to pay fees upfront and would not be turned away. While many knew about the FQHC in their community, they noted that even a sliding fee schedule was too costly for them.

Loss of Medicaid eligibility after childbirth for women who live in non-expansion states and the lack of automatic transitions to state family planning programs result in gaps in reproductive health care for low-income women with infants. Both interviewees and focus group participants reported that losing full Medicaid coverage at 60 days postpartum, or due to small changes in income, disrupts continuity of care and creates barriers to family planning and other health care services. Also, providers in Missouri said that the state’s policy that disqualifies clinics that provide or are affiliated with abortion providers from participating in Medicaid has reduced women’s access to family planning, as well as to abortion services.

Focus group participants and providers reported experiencing challenges with certain Medicaid rules and low reimbursement rates. There was clear consensus that Medicaid coverage is important for facilitating access to family planning services; yet some clinicians and focus group participants raised concerns with various Medicaid policies. For example, in St. Louis, providers said that state Medicaid rules tie coverage for long-acting revisable contraceptive (LARC) devices (IUDs and contraceptive implants) to specific patients; if a patient does not show for her appointment, the device cannot be used for another woman and may go unused, thus discouraging providers from stocking supplies and providing same-day access. The state has reportedly eliminated this requirement, but one provider noted that there were not yet any guidelines from the state to define or help facilitate the process. Across study states, providers also discussed low reimbursement rates as problematic, and women discussed their frustrations with having a limited range of providers who participate in the program.

Provider Supply and Distribution

All five communities studied are “medically underserved,” and are health professional shortage areas, designated by HRSA as having too few primary care providers, high infant mortality, high poverty, or a large elderly population. In recent years, many rural areas have experienced a spike in hospital closures or a reduction in obstetrical services, particularly in states that have not expanded Medicaid. This has forced women to travel long distances to see medical providers, particularly for maternity care. In addition, the emergence of federal and state restrictions on funding for reproductive health services is starting to limit the supply of providers that receive funding to serve low-income and uninsured women. The Title X national grant program funds local clinics to provide free or low-cost family planning services to uninsured and low-income individuals. In 2019, the Trump administration finalized new regulations that prohibit any sites that receive Title X funding from providing abortion referrals. They also mandate referrals to prenatal services for all pregnant patients, and require complete financial and physical separation from sites that provide abortion services. These rules were not in effect at the time of the visits to these communities, but some family planning providers that were interviewed raised concerns that such policies would result in a considerable reduction in the share of providers participating in Title X and jeopardize their ability to continue providing family planning services to low-income and uninsured women.

While most focus group participants reported that they know where to go for family planning services, some faced obstacles to obtaining their preferred method in a timely fashion, and others were misinformed about their contraceptive options. In Missouri, pre-authorization and limitations on reimbursement for LARC preclude women from obtaining these methods on the day of their initial visit. This was raised as especially challenging for low-income women who have to take time off work, arrange for childcare, or travel long distances to a clinic. Some focus group participants shared misgivings and concerns about the side effects and safety of LARC methods based on prior personal or friends’ experiences. Interviewees in multiple regions noted a lack of training in LARC insertions and removals among community providers. In Selma, the county health department was in the process of training a clinician to insert IUDs, but at the time of the site visit, women had to go to another county health department or private provider participating in the state’s family planning program if they wanted to get an IUD inserted. Plan B, emergency contraception that helps prevent pregnancy when taken within 72 hours of unprotected sex, was generally available in most communities. However, interviewees and focus group participants cited cost as a barrier to obtaining it over the counter, and some women confused it with medication abortion. Costs associated with family planning in general were often a barrier for women who are uninsured, undocumented, and recent immigrants. In Dallas County, Alabama, fragmentation of the health care system meant that low-income women must go to different clinics for contraception, primary care, and obstetrical care, though a rural health center is in the process of implementing a more integrated approach to serve women in the community.

Tulare County, California

Tulare County sits in the Central Valley, a partially rural and conservative area located in the heart of the agricultural region of California. One of the poorest counties in the state, Tulare County has large migrant worker, immigrant, and Latinx populations. Rates of sexually transmitted infections (STIs) and teen pregnancy are much higher than the state average.

Rural areas, in particular, face severe provider shortages and persistent challenges in recruiting and retaining clinicians trained to offer reproductive and sexual health services. Focus group participants and interviewees described shortages of family planning providers in the rural and low-income areas. They also reported insufficient numbers of providers offering STI testing and treatment, HIV care, obstetrical care, trans-competent and LGBTQ-friendly services, and a scarcity of abortion providers. Practice consolidation in Erie County has resulted in limited choices of obstetricians for those enrolled in Medicaid. At the time of the site visit, the IHS facility on the Crow reservation did not have an ultrasound technician, but they have since hired someone for this position. Interviewees in Alabama reported that the state’s restrictive Medicaid eligibility limit and low reimbursement rates have contributed to a series of hospital closures in the region. This has left the Selma-based hospital with the only maternity ward and obstetrics clinic in the seven-county region. Interviewees in Selma, Tulare County, and the Crow reservation cited challenges attracting physicians to rural, low-income regions, and retaining them after they complete medical school loan forgiveness programs. Telemedicine was identified by many interviewees as an emerging solution to address barriers in these areas, but upfront costs can hinder these efforts, and not all communities have access to broadband. At the time of this study, none of the communities offered reproductive health services using telemedicine beyond e-prescriptions.

Long travel distances and lack of public transportation in rural regions are major barriers to reproductive services, but transportation issues arose in urban communities as well. Women in some communities face logistical obstacles to obtaining services in a timely manner. This is particularly apparent in an area like Dallas County, Alabama, where many obstetrical care providers have closed, and there is no meaningful public transit infrastructure. Some focus group participants in Selma described having to pay friends or family to drive them to a clinic. Transportation was also problematic for women in the Crow tribe who must travel off the reservation to Billings, Montana, for prenatal services after 30 weeks of pregnancy. The sheer size of Tulare County also makes transportation difficult for low-income farmworkers who often do not have a car and must travel long distances for their care. Even in St. Louis, an urban community, women who lived in the county reported difficulty getting to care as public transit options fell short for them.

Sex Education

In all of the communities, insufficient sex education for youth emerged as a key issue. Today, about half of states (24 plus DC) require schools to provide sex education, and 34 plus DC require HIV education. A minority of states (18 plus DC), however, require sex education to include information on contraception, while 26 states require that programs stress abstinence. The Trump administration has increased investment in abstinence curricula, and state governments have awarded grants to crisis pregnancy centers (CPCs), faith-based organizations that counsel women against abortion, to teach abstinence. Furthermore, the Centers for Disease Control and Prevention (CDC) recently reported a rise in rates of many STIs, particularly among teens and young adults. In the case study interviews and focus groups, many individuals raised concerns about limited sex education and its contribution to poor health literacy about sexual and reproductive health.

Interviewees described variation in sex education across schools and felt that the content did not cover much of the information young people need; most areas stressed abstinence or “abstinence plus”³  curricula. Sex education curricula are typically selected at the local school district, school, or classroom level, which can cause wide variation in content even within the same community. Focus group participants perceived the availability and curricula of sex education as inconsistent among schools and often inadequate for high school-aged students. The Erie City School District adopted the evidence-based, comprehensive FLASH curriculum,⁴  while CPCs teach “character education” promoting abstinence in many Erie County schools. An interviewee reported that the CPCs receive state, federal, and private funding, enabling them to conduct more outreach and programs than the more comprehensive reproductive health care providers. An interviewee in St. Louis County recounted recent parent and teacher pushback to the limited sex education from faith-based groups, resulting in the adoption of comprehensive sex education curricula in several school districts. Interviewees in all of the communities concluded that lack of comprehensive sex education in schools contributes to high rates of STIs, HIV, and teen pregnancy. This sentiment was also expressed by many focus group participants who felt that young people were not getting the information they needed to avoid unintended pregnancy and prevent the transmission of STIs.

St. Louis, Missouri

On the eastern edge of Missouri, St. Louis stands out as a liberal region in an increasingly conservative state. The St. Louis metropolitan area is highly segregated, and deep health disparities exist between Black and White residents. St. Louis has a large Catholic population and concentration of Catholic-affiliated hospitals and schools.

Focus group participants and interviewees indicated that cultural influences and norms limit knowledge about contraception and STIs. In Dallas County, interviewees and focus group participants noted that most churches discourage discussion of sexual health, though a few have hosted events to promote HIV prevention and family planning. Some interviewees felt that formalized, comprehensive sex education in schools could be particularly important in more conservative communities, such as Tulare County, where discussions about sexual and reproductive health may not be commonplace at home. Providers on the Crow reservation also pointed out that discussions in the family about sexuality and reproductive health are not part of the cultural norm, and many young people lack access to basic health information.

Abortion Restrictions

Federal and state regulations shape access to abortion, and this was evident in all of the communities included in this study (Table 1). The federal Hyde Amendment restricts state Medicaid programs from using federal funds to cover abortions beyond the cases of life endangerment, rape, or incest. However, 16 states use their own state funds to cover abortions in other circumstances. Many other states have imposed restrictions on abortions including waiting periods, abortion facility requirements, and gestational age limits, some with the intent to overturn Roe v. Wade. These restrictions have translated to clinic closures in several states and the total absence of abortion clinics in many communities. This makes abortion effectively inaccessible for some women, particularly those who are poor or who live long distances from the nearest abortion provider.

Access to abortion in the five communities is severely limited, due to restrictive state policies resulting in a shortage of abortion providers and/or long travel times, plus a lack of transportation options. Alabama and Missouri have enacted some of the strictest abortion regulations in the nation, contributing to closures that leave just one abortion provider in Missouri (located in St. Louis), and one abortion provider in Montgomery, Alabama, that serves all of southern Alabama, parts of Mississippi and the Florida panhandle. Recent laws passed in these states would have essentially outlawed abortions if they had not been (temporarily) blocked by the courts.⁵  Yet, outside of Missouri’s attempt to ban abortion legislatively, the clinic in St. Louis remains vulnerable to closure. It is at the center of a state-level investigation about facility licensing that has generated national attention. A decision is expected in early 2020 as to whether the clinic can remain open.

Three of the counties studied (Erie, Tulare, and Dallas) have no abortion providers. Even in Tulare County and the Crow reservation, which are in states that cover abortion services under their Medicaid program and have very few restrictions on the provision of abortion, women must travel at least an hour to reach the nearest provider. Crow women must travel to Billings because the Indian Health Service, as a federal agency, is prohibited from providing abortion.

In each of the communities studied, anti-abortion sentiment played a significant role in limiting access to abortion services. Interviewees reported intense protesting outside abortion clinics in Montgomery and St. Louis and noted that protestors contributed to the closing of clinics in Erie and Selma. In Tulare County, California, anti-abortion billboards lined the highway and the Planned Parenthood of Visalia in Tulare County had been vandalized numerous times despite not providing any abortion services onsite. Focus group participants shared that protestors and cultural stigma surrounding the procedure made them feel ashamed or afraid, or deterred them from discussing or seeking an abortion. Interviewees in Dallas County and St. Louis reported that some providers and health center staff discourage abortions. Some focus group participants in St. Louis felt the state-mandated counseling was intended to make them second guess their own decisions. In many of these communities, churches play a prominent role in daily life, and religious influences discourage women from seeking abortions. In Selma, Tulare, and the Crow reservation, many focus group participants expressed opposition to abortion and said they would not consider it an option for themselves. In every focus group, however, there were a few women who said they had had an abortion or knew of someone who had one.  

Dallas County (Selma), Alabama

Dallas County is one of 18 counties comprising the largely rural, agricultural Black Belt region of Alabama, with a majority African American population. Selma, the largest town in Dallas County, played a pivotal role in the Civil Rights Movement. Selma faces high poverty and unemployment rates and poor health outcomes. Churches are central pillars of community life.

There was misinformation or lack of information about where women could obtain an abortion, and in some communities, focus group participants believed abortion was illegal in their state. In the communities with strict anti-abortion laws and strong anti-abortion environments, some interviewees and focus group participants incorrectly believed that abortion is illegal in their states. One crisis pregnancy center (CPC) in Erie had a large presence and offered a range of services such as pregnancy tests, STI screening, ultrasounds, and referrals to prenatal care, all at no cost to clients. Many interviewees referred women to the site because they mistakenly thought the CPC offered contraception and abortion referrals. More than one interviewee in Selma mistakenly thought that a local CPC offered abortions, and one listed them on their patient referral sheet for “abortion services,” just above the abortion providers in Montgomery and Tuscaloosa.

Limitations on Medicaid coverage for abortion services in some states, as well as procedure costs, make abortion unaffordable for many low-income women. The California and Montana Medicaid programs cover abortion services beyond the Hyde Amendment exclusions for life endangerment of the woman, rape, and incest. Alabama, Pennsylvania, and Missouri limit Medicaid coverage to the Hyde provisions, but an abortion provider in Alabama noted that she has never been able to obtain reimbursement even under the permitted circumstances. Focus group participants cited cost as a major barrier to accessing abortion care, with procedure costs reportedly ranging anywhere from $400 to $1,500. Many women face additional costs associated with transportation, childcare, and overnight lodging when state laws require women to wait 24-72 hours between state-mandated counseling and obtaining the abortion, as is the case in Missouri, Alabama, and Pennsylvania. There are local and national organizations that provide financial and practical assistance to some women seeking abortion; however, they do not have the resources to assist all the women who seek abortion and who cannot afford the services and the associated travel and lodging costs. Even when funds are available, logistical challenges may remain. For example, an Alabama-based organization provides financial assistance for transportation to women traveling long distances for abortions, but described barriers transferring funds to low-income women who do not have bank accounts.

Community Strengths and Initiatives

Across the communities, providers and community organizations were engaged in initiatives intended to address barriers to reproductive health care. Although interviewees emphasized that much more needs to be done to eliminate the structural, cultural, political, and economic barriers to reproductive health services for low-income women, there were multiple organizations and individuals in each community leading various efforts to fill gaps and meet community needs. In many cases, community-based organizations took active roles in family planning, STI, or HIV education and advocacy, while others provided direct, practical assistance. Some of these strategies include:

• Supporting Positive Opportunities with Teens (SPOT) is a freestanding clinic in St Louis, Missouri, that provides teen-friendly primary care, mental health care, and express STI testing at no cost. They also offer case management to address social determinants of health. The clinic has a school-based health center (SBHC) in an area public high school, which is one of the first comprehensive SBHC programs in the area. SPOT served 3,253 St. Louis teens in 2018 (80% African American, 15% LGBT and unstably housed, and 2-3% gender nonconforming youth).
• ACT for Women and Girls (ACT), a reproductive justice grassroots organization in Tulare County, California, offers youth-led programming with a focus on reproductive health and provides comprehensive sex education in schools. The organization also has conducted a pharmacy access project since 2009 where youth secretly shop at 60-70 pharmacies each year in Tulare County to assess availability of over the counter emergency contraception (EC).
• Medical Advocacy and Outreach (MAO) is a non-profit health and wellness organization based in Montgomery, Alabama. Together with their regional partner, Selma AIDS Information and Referral (AIR), the two organizations make up a comprehensive network of full-service and Bluetooth-enabled telehealth satellite clinics providing health and social services to individuals diagnosed with HIV. This includes medical services such as primary care, gynecological and sexual health services, dental care, and mental health and substance use treatment. They also provide social services such as group and peer counseling, transportation to appointments, housing support, medication assistance, and a food bank. Special outreach and services are provided for pregnant women and formerly incarcerated individuals.
• Messengers for Health is a non-profit organization addressing health equity among the Crow tribe in Montana. They rely on “messengers” from the community to educate the Crow people about risk factors for cancer and assist them to seek out preventive screening. Their first program educated Crow women and girls about the prevention of cervical cancer and related sexual risk factors using a culturally competent curriculum. They also started the Crow Warriors for Health program to increase colorectal, prostate, and lung cancer knowledge among men in the community. In Crow culture, cancer reportedly used to be considered a taboo topic, but due to the work of Messengers for Health, women and men are now discussing it openly and regularly seeking preventive screenings such as pap tests, mammograms, and colorectal screenings.
• Multi-Cultural Health Evaluation Delivery System (MHEDS) in Erie, Pennsylvania, is an FQHC “look-alike” center that conducts health screenings for the area’s refugee population, which grew considerably in the early years of the decade. The health center has tailored its services and staffing to address the particular concerns of Erie’s refugee communities, who come from a wide array of countries, including Nepal, the Democratic Republic of Congo, Bhutan, and others. MHEDS offers interpreters to help bridge language and cultural barriers and is working to shore up provider capacity on specific topics that affect some communities, such as female genital mutilation and differing views on the provision of prenatal care.

Conclusion

A close examination of low-income women’s experiences with reproductive health care in five diverse communities reveals challenges and strengths that are not evident in statistics alone. In-person interviews, focus groups, and first-hand, on-the-ground experiences in each of the communities uncovered barriers to care common to all the communities, as well as obstacles unique to specific locales and populations. These case studies also revealed some surprises. For example, Missouri, which has not expanded Medicaid under the ACA, places significant limits on abortion and prohibits Medicaid payments to its sole abortion clinic for non-abortion services such as contraceptives; yet the St. Louis region is home to a wide variety of providers and community-based organizations that are working to improve access to the full range of family planning services. In contrast, California, expanded Medicaid eligibility under the ACA, imposes few state-level restrictions on abortion access, and operates the nation’s largest Medicaid-funded family planning program; nonetheless, access to abortion services for women in Tulare County is limited, as the nearest abortion provider is at least 50 miles away. These findings underscore that particularly for rural or underserved communities throughout the country, federal and state policies alone do not guarantee or determine access, but rather intersect with local influences.

The factors influencing reproductive health access are a complex web of social determinants of health; coverage policies; state and local investments and leadership; provider supply and distribution; sex education; the political, cultural, and religious environment; and the legacy of discrimination in many parts of the country. Across all of these communities, we met many leaders working in challenging environments to assure that reproductive care is high quality and equitable and that information is accessible to all members of their community. Importantly, talking to low-income women on the ground underscored what they expect of the health care system in providing access to reproductive health services, and the challenges in making affordable access a reality.

KFF: Usha Ranji, Michelle Long, and Alina SalganicoffHealth Management Associates: Carrie Rosenzweig and Sharon Silow-Carroll

Introduction

Dallas County is one of 18 counties comprising the largely rural, agricultural Black Belt region of Alabama. Originally a reference to the region’s dark, fertile soil, the term Black Belt later became associated with African American enslavement on plantations, and more recently with its majority African American population (Figure 1).

Selma, the largest town in Dallas County, played a pivotal role in the Civil Rights Movement. While considered the “Queen City of the Black Belt,” Selma faces high poverty and unemployment rates and poor health outcomes. Dallas County is federally designated as medically underserved and as a health professional shortage area. Alabama’s decision not to expand Medicaid, coupled with the state’s extremely low Medicaid income eligibility limits (18% of the federal poverty level for parents), leaves many low-income residents without access to coverage for basic health care services. Approximately 20% of Dallas County residents age 19-64 were uninsured in 2017.⁶  Several community hospitals have closed in recent years, leaving one hospital in Selma with the only obstetric delivery services in the seven-county region. Alabama has recently been thrust into the national spotlight with its passage of a near-total abortion ban, punishable by up to 99 years in prison for the provider. This law has been blocked by a federal court ruling, but it is expected that the state will continue to challenge it. Churches are central pillars of community life, and many have strict beliefs about sex and reproductive health and tend to oppose abortion.

This case study examines access to reproductive health services for low-income women in Selma and Dallas County, Alabama. It is based on semi-structured interviews conducted by staff of KFF and Health Management Associates (HMA) with safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates (“interviewees”), as well as a focus group with low-income women in April 2019. Interviewees were asked about a wide range of topics that shape access to and use of reproductive health care services in their community, including availability of family planning and obstetrical services, provider supply and distribution, scope of sex education, abortion restrictions, and the impact of state and federal health financing and coverage policies locally. An Executive Summary and detailed project methodology are available at https://www.kff.org/womens-health-policy/report/beyond-the-numbers-access-to-reproductive-health-care-for-low-income-women-in-five-communities.

Medicaid Coverage and Continuity

Alabama’s decision not to expand Medicaid and its low Medicaid reimbursement rates and income eligibility limit leave many low-income residents without health care coverage for most basic health care services outside of pregnancy (Table 1). As a result, low-income women rely heavily on the state’s family planning waiver program (Plan First), the federal Title X family planning program, and some targeted, limited public programs.

The vast majority of low-income women in Alabama do not have a pathway to basic health coverage outside of pregnancy-related coverage under Medicaid. Alabama has not expanded Medicaid under the Affordable Care Act, and women with dependent children who earn more than 18% of the federal poverty level (FPL), or roughly $3,800 a year for a family of three, exceed the state’s eligibility threshold, which is the second lowest in the United States. Adults without children at any income level who are not pregnant are not eligible. Pregnant woman are eligible for Medicaid up to 146% FPL, though that coverage ends 60 days after delivery. Several interviewees mentioned lack of Medicaid expansion as a significant barrier to accessing care. One focus group participant said that she lost her Medicaid coverage and became uninsured after her husband started collecting Social Security checks. Few low-income focus group participants had full-benefit Medicaid, while many more only had coverage for family planning (Figure 2).

The Dallas County Health Department participates in the Well Woman Alabama program, offering free health counseling, preventative services, screenings, and management of chronic diseases such as elevated cholesterol and hypertension for women ages 15-55. A Federally Qualified Health Center (FQHC) in Selma provides health services to uninsured women on a sliding fee scale; however, many focus group participants reported that when they need health care, they go to the emergency room where they do not need to pay anything upfront.

Alabama’s family planning program, Plan First, is often the only source of contraceptive coverage for low-income women. The Plan First⁷  program covers all FDA-approved contraceptive methods, STI and HIV testing, and an annual exam at no cost for women ages 19-55 with income up to 146% FPL. The program also covers tubal ligations and vasectomies for adults 21 and older. In Dallas County, the only providers participating in Plan First are located in Selma. This reportedly poses a barrier to women who live in the outlying areas of the county because there is no public transit infrastructure, and many low-income families do not own cars. Because women who have undergone sterilization are not eligible for the program, some focus group participants reported that they lost access to needed services after they had a tubal ligation or hysterectomy. Interviewees recognized the important role that the Plan First program plays to fill gaps in women’s health services, but felt that expanding full-benefit Medicaid would go much farther in meeting the health needs and providing continuity of care for Alabama’s low-income residents.

Provider Distribution

Because there is only one remaining hospital offering Ob-Gyn and labor and delivery services across much of central and southern Alabama, many women must travel long distances for maternity care and have limited options. Some providers are developing innovative solutions to address transportation difficulties, provider shortages, and health care system fragmentation.

Dallas County has a shortage of obstetric providers, and both focus group participants and interviewees expressed concerns about the quality of care available due to challenges in recruiting and retaining physicians. Providers in Dallas County, one of the poorest counties in the state, reported that it is hard to recruit qualified employees — from front desk staff to physicians — because many people living in the area do not have the required education or work experience, and those who are qualified leave for better opportunities elsewhere. Interviewees reported that the number of Ob-Gyns providing the full range of obstetric and gynecological services in the region has declined to just two, both of whom are employed by the Selma hospital’s outpatient obstetric clinic. Focus group participants and interviewees expressed concerns about the limited choice of providers and quality of care as a result of these shortages. Individuals needing specialty care must travel to Birmingham (90 miles) or Montgomery (50 miles).

Hospital closures throughout the state have left only one community hospital serving five counties, and the only hospital with inpatient labor and delivery services in a seven-county region. The lack of Medicaid expansion and low reimbursement rates were mentioned by providers and other interviewees as contributing factors to hospital closures in smaller towns across southern and central Alabama. As a result, Selma’s community hospital (Vaughan Regional Medical Center) has become the main place people go for health care, and the only site for inpatient labor and delivery services and outpatient obstetric care in the entire region. In addition, there is no Neonatal Intensive Care Unit (NICU) or pediatric surgery unit in Dallas County; newborn infants needing emergency care must be taken by helicopter to facilities in Birmingham. One interviewee commented on the high rates of infant and maternal mortality in the area and said that the lack of Medicaid expansion, education, and providers have all played a role.

Telemedicine is emerging as a promising solution to address the transportation and distance barriers in Dallas County. There is no public transit infrastructure in Dallas County and women in outlying parts of the county must travel long distances to access health care, impeding access to all health care services. Although West Alabama Public Transportation, a Medicaid transportation program, is an option, individuals reported that they may have to wait all day to be picked up to return home. Many interviewees and focus group participants reported having to pay their family or friends as much as $20 for a ride to get health services.

Because of transportation barriers and difficulties recruiting clinical staff, several providers are implementing highly sophisticated and successful telemedicine networks. Medical Advocacy and Outreach (MAO) is a Montgomery-based health and wellness service provider serving nearly 2,000 people living with HIV/AIDS, Hepatitis C, and other life-threatening illnesses annually across 28 counties; they have established one of the only telemedicine networks that provides direct medical care in the region. As of April 2019, they had 10 units installed, with a goal to put a telemedicine unit in every county health department. Their local AIDS services partner in Selma, Selma AIDS Information and Referral (AIR), also offers videoconferencing for substance use and mental health counseling. Nonetheless, a lack of broadband throughout the most rural parts of the county limits the utilization of digital health solutions and emphasizes the importance of both transit and communications infrastructure development in rural communities. The Rural Health Medical Program (RHMP), the only FQHC in the county, offers medical consultations across sites between nurse practitioners and collaborating physicians and with partnering specialists. RMHP also has a telepsychiatry program, and they are renovating a mobile van they expect to be operational in fall 2019 that will offer medical care, optometry, as well as behavioral and mental health services in satellite towns, school-based programs, and community health fairs.

 The health care delivery system in Selma and Dallas County is significantly fragmented, and providers face challenges with care coordination. Low-income women generally go to the health department for family planning needs and STI care, the hospital and outpatient clinic for obstetrical care, and the RHMP or the emergency room for all other services. One provider felt that although the system was fragmented, providers communicate with one another and patients know where they need to go for each service. The RHMP, however, is trying to integrate care with other providers and centralize services for their patients. They explained that the fragmentation of the health care system places pressure on social workers, who are scarce in Selma, to coordinate and direct patients to care.

There is a severe mental health provider shortage, and many focus group participants reported experiencing stress, anxiety, and depression. Focus group participants described significant stress related to finances, family, and health. A few had seen a doctor and were taking medication for their depression and anxiety, but they felt that the medications’ side effects often made them unable to take care of their children or perform daily activities. Some local providers have expanded their mental health programs, but an interviewee still noted a significant shortage in mental health providers.

STI and HIV Screening, Prevention, and Treatment

There are not enough providers distributed around the county to meet the need for STI testing and treatment. Alabama has some of the highest STI rates in the nation, and the Black Belt region is especially hard hit. The Dallas County Health Department offers free testing, treatment, and annual screening for all STIs, HPV vaccines, and discusses HIV and pre-exposure prophylaxis (PrEP) with their patients. They also employ an HIV coordinator, and their disease control staff does extensive education and outreach in colleges and churches. Still, people in the outskirts have difficulty getting to the health department.

Dallas County has a comprehensive, integrated provider network for individuals diagnosed with HIV, but there are not enough providers conducting routine HIV screening, testing, or prevention. In 2017, Dallas County had a new HIV diagnosis rate of 17.9 per 100,000 people (compared to 11.8 nationwide), one of the highest in the state (Figure 3). Interviewees reported that HIV disproportionately affects young African American men who have sex with men. MAO serves as a “one-stop shop” for individuals diagnosed with HIV, providing HIV treatment and comprehensive health care services. Selma AIR conducts HIV testing and refers patients who test positive to the MAO satellite clinic housed at UAB Selma Family Medicine for treatment.

However, updates in testing policies have not yet been fully adopted by many individual clinicians. For example, MAO has been educating hospital administrators about the removal of a requirement for a separate consent for HIV testing, but the change in practice has not yet been implemented at all levels of the system. The hospital’s outpatient obstetric clinic routinely tests for HIV, but interviewees suggested that other doctors are not discussing HIV risks with patients due, in part, to competing priorities like the high burden of chronic diseases, and the continued stigma around HIV.

Interviewees reported there is limited funding for HIV prevention efforts. Although PrEP is a highly effective preventive medication for HIV and is available free of cost for lower-income individuals through an assistance program from the manufacturer, that option does not appear to be fully leveraged. In fact, interviewees reported that most of their patients hit roadblocks because they lack health insurance to cover PrEP.

Stigma and confidentiality concerns were cited as significant barriers to HIV testing and treatment. Interviewees discussed local resistance to HIV testing due to homophobia and assumptions about “what someone with HIV looks like.” They also suggested that some providers in private practice do not want to care for patients with HIV. Additionally, there is a lack of awareness among some providers that women living with HIV can give birth without transmitting it to her infant.

Because Selma is a small community, there is also concern about confidentiality. Selma AIR provides transportation to appointments, but they reported that they have patients who do not want to be seen in their van or in a clinic known to be associated with AIDS, and some have stopped coming in for medical services due to a fear of encountering someone they know.

Social Determinants of Health

Social determinants such as housing, employment, education, and poverty play a sizable role in the health of Dallas County residents, contributing to high rates of chronic conditions. In addition, historical and current racism has reportedly fostered mistrust of the medical establishment among the African American community.

High poverty rates, limited affordable housing, lack of vocational training and employment opportunities, and other socio-economic stresses lead many women to prioritize other needs before health care and family planning. Almost a third of the population (32%) in Dallas County lives below the federal poverty level.⁸  Focus group participants discussed a scarcity of well-paying jobs and challenges with childcare among their daily concerns. One provider pointed out that without transportation or childcare, women living in rural areas will not come into Selma for health care unless they are in pain and that other financial priorities such as food and housing are more pressing. These factors also contribute to high rates of chronic conditions such as diabetes (including among pregnant women), hypertension, obesity, and kidney disease.

Historical mistrust of the medical establishment among the African American community may contribute to lack of engagement in early and preventive care. Some interviewees commented on the lasting effect of slavery, racism, and the notoriously unethical Tuskegee syphilis study, conducted by the U.S. Public Health Service in the mid-1900s in nearby Macon County. The legacy of that experiment, slavery, and the Jim Crow era still lives on in the area today. Interviewees discussed a need for more African American providers who could provide culturally congruent care, along with cultural sensitivity training for existing providers. A new Ob-Gyn at the hospital OB clinic is an African American female, which she views as important for her patients.⁹ 

Contraceptive Provision, Access, and Use

Focus group participants and interviewees said that a lack of sex education, the influence of the churches, and cultural norms have contributed to the high rates of teen pregnancy in the area. The Dallas County Health Department is a key provider of contraception for low-income women.

The Dallas County Health Department, the local Title X provider, is the primary resource for contraception in the community and has an extensive case management program; however, resources and capacity are limited. The health department located in Selma serves approximately 3,000 women a year from Dallas County and some of the surrounding counties. It assists uninsured women to enroll in Plan First and is the primary provider of family planning for low-income women in the region. They offer a wide range of methods including emergency contraception, the Depo-Provera shot, oral contraceptives, and implants. At the time of the site visit, women requesting IUDs were referred to a community provider, but the health department was training a clinician to insert IUDs onsite. The health department also provides family planning education and counseling, and extensive case management for patients with myriad challenges related to housing, food, domestic violence, and other needs. Social workers work with teens, reminding them to come in to refill their contraception on time. They also conduct outreach, but interviewees reported that health department does not have the resources to fully meet the needs of the community.

There are a range of Plan First providers in the county including private physicians’ offices, the RHMP, and the hospital outpatient obstetric clinic, but most focus group participants go to the health department because it is convenient, the providers “understand” them, and services are confidential and free.

Interviewees and focus group participants reported that most women use Depo Provera to prevent pregnancy. Focus group participants said they could get the Depo shot right at the health department, but they noted a “two-step” process at other clinics in which they had to go to the clinic to get a prescription, go to the pharmacy to pick up the shot, and then return to the clinic to get the shot. For women seeking an IUD after giving birth, the Selma hospital does not offer immediate postpartum IUDs. Focus group participants also described challenges obtaining tubal ligations after delivery related to Medicaid policies and scheduling. Some focus group participants said that it is difficult to get an appointment with the hospital outpatient OB clinic. At the time of this study, RHMP was in the process of establishing an MOU with Ob-Gyns serving Medicaid patients to facilitate easier referrals.

Role of Religion and Sex Education

Comprehensive, medically accurate sex education is not usually offered in Dallas County schools. Interviewees and focus group participants said that the lack of health literacy and sex education in the schools contributes to high rates of STIs, HIV, and teen pregnancy. Alabama requires two weeks of HIV education be provided in public schools but does not require general sex education. Interviewees felt that the HIV education requirement is not enforced uniformly within the state, and that schools vary in whether and how they teach sex education, generally focusing on abstinence rather than more comprehensive approaches. Interviewees reported that these factors resulted in a lack of knowledge about STIs, misinformation about contraceptive methods, and numerous HIV cases among students in the area. Selma AIR, which provides HIV education from 5^th through 12^th grade in every school in its service region, reported that some school nurses and teachers invite them in to teach abstinence as a method of HIV prevention, but that they would prefer to teach more effective evidence-based approaches. A local community development organization highlighted the impact of the lack of resources at the state and local level; they added that sex education is not a priority because schools “are trying to figure out how to keep the lights on.”

Interviewees reported that although there are a small number of churches (e.g., Methodist, Unitarian Universalist) that promote family planning and STI information at community events, the majority of churches do not. Interviewees noted that some churches are strongly opposed to discussing family planning and STI prevention because they believe that sex or pregnancy before marriage is shameful. At the same time, several interviewees suggested that teen pregnancy has been normalized because it is so common.

Access to Abortion Counseling and Services

There are no clinics providing abortion in Dallas County. Substantial local opposition to the service was noted among both focus groups participants and interviewees.

There is no abortion provider in Dallas County, and obstacles such as transportation, anti-abortion sentiment, and cost make it difficult for women to obtain an abortion. The closest abortion clinic to Selma is located 50 miles away in Montgomery, where staff reported seeing many patients from the Selma area. There used to be an abortion provider in Selma, but intense protesting and a reported problem with state licensure caused it to close. The sole hospital in Dallas County does not perform abortions even in cases of life endangerment or lethal fetal anomalies. Instead, they refer patients to tertiary clinics in Birmingham or Montgomery. Women whose pregnancies are a result of rape or incest are reportedly referred to rape counseling. According to one interviewee, many health care providers are anti-abortion, and some women seeking an abortion are reportedly told “to get out of their office and never come back.”

Cost is cited as a barrier to abortions for many low-income women, with the procedure fees ranging from about $600 to $1,500, depending on the gestational age. In Alabama, Medicaid will not pay for abortion outside of the exceptions of rape, incest, or life endangerment of the woman, but the Montgomery-based clinic reported that they have never been able to get an abortion paid for even under these circumstances. The Yellowhammer Fund assists women seeking abortions with the cost of the procedure; they reported providing about $80,000 in financial assistance in 2018. Since the state passed its near-total abortion ban in 2019, donations to Yellowhammer have risen, and the Fund has increased assistance to cover the procedure from about $650 per week to about $9,000 per week, helping 20 to 40+ women per week pay for abortion services. The Fund also has a budget of $4,000 per month for other logistical support such as transportation. Because many low-income women do not have bank accounts, especially those from rural areas, the Fund also provides gift cards (rather than transferring funds into an account electronically) to women to pay for gas or to rent a car to travel to their appointment.

Highly restrictive state laws and widespread anti-abortion sentiment in the community make it difficult to provide or obtain an abortion. Interviewees cited the 48-hour waiting period and requirement that abortion practitioners have admitting privileges at a local hospital as particularly limiting. The Montgomery abortion clinic explained that the 48-hour waiting period is misleading; because they are a small clinic, they perform abortions only one day a week, so depending on when the woman comes in, she may have to wait up to nine days for her procedure.

Providers also spoke of the anti-abortion sentiment in the community. There are protesters outside the Montgomery abortion clinic every day, which escalates on procedure days. Interviewees reported that many clinics would not last long in the area because “people are very against abortion in this state.” They reported that abortion providers cannot live in the same community in which they work due to harassment. Montgomery Area Reproductive Justice Coalition provides escort services into the clinic, overnight accommodations, and other supports for women traveling to Montgomery for abortion services.

Alabama signed the most restrictive anti-abortion measure into law on May 15, 2019. Scheduled to begin in November 2019, it would make abortion a felony except when necessary to prevent serious health risk to the woman, punishable by up to 99 years in prison for the providing physician. This law, passed after this case study was conducted, is temporarily blocked by court order. At the time of this publication, state law allows abortion up to 20 weeks.

Some providers refer women to the crisis pregnancy center (CPC) in Selma for assistance, unaware of its anti-abortion mission. CPCs typically offer limited medical services such as pregnancy tests and ultrasounds, and discourage women from seeking abortions. The health department in Selma lists Safe Harbor, a local CPC, as a referral for “abortion services” above abortion providers in Montgomery and Tuscaloosa. About half of the focus group participants reported knowing that Safe Harbor provides free pregnancy tests but not contraception. Participants who had gone there reported that they were shown a video about abortion. Two other focus group participants had gone to CPCs in Montgomery and Birmingham for pregnancy tests, where clinic staff pushed adoption as an option and asked the women to read the Bible.

Focus group participants were opposed to abortion, and most thought the procedure is illegal in Alabama. Some interviewees believed that a lack of education about abortion contributes to the anti-abortion environment. One interviewee stated, “If everything they have heard is negative about abortion, if they have heard these messages and no one has sat down to explain to them the positives and negatives, the planning beforehand, there is a huge gap.” All focus group participants expressed opposition to abortion, but some said they were okay with abortion if the pregnancy is life threatening. Two participants shared that they had had an abortion; one said it was a Medicaid-funded abortion because of life-threatening pregnancy and the other was due to a fetal anomaly.

The focus group identified considerable misinformation about abortion services among women in the community. Most focus group participants incorrectly believed that abortion is illegal in the state, and only half knew where you could get one. Most also incorrectly equated emergency contraception (EC) with abortion, but they knew that you could get EC at the health department or buy it over the counter. Another participant incorrectly thought abortion threatens future pregnancies.

Conclusion

Dallas County has a network of community-based organizations and health care providers that are committed to improving the health and well-being of women living in the Black Belt region of Alabama, despite considerable structural challenges in the community. Several interviewees said that Alabama’s decision not to expand Medicaid and its strict eligibility limits means many low-income women remain uninsured or only have coverage for family planning services. Women in the county, including those in Selma, suffer from high rates of chronic health conditions and face substantial barriers to care including poverty, unemployment, lack of transportation, unaffordable housing, and limited education. In addition, due in part to provider shortages and hospital closures, women living throughout the Black Belt have to travel long distances to access obstetrical care, exacerbating high rates of infant and maternal mortality. The heavy influence of churches and the state’s politically conservative climate have resulted in limited sexual health education, and stigmatization and restriction of abortion care.

Acknowledgements

The authors thank all of the interviewees that participated in the structured interviews for their insights, time, and helpful comments. All interviewees who agreed to be identified are listed below. The authors also thank the focus group participants, who were guaranteed anonymity and thus are not identified by name.

June Ayers, Director, Reproductive Health Services

Keshee Dozier-Smith, CEO, Rural Health Medical Program, Inc.

Meneka Johnson, PhD, COO, Rural Health Medical Program, Inc.

Felecia Lucky, President, Black Belt Community Foundation

David McCormack, CEO, Vaughan Regional Medical Center

Clara Moorer, Director, Women’s Health Services, Vaughan Regional Medical Center

Rhonda Parr, Nurse Coordinator, Dallas County Health Department

Mia Raven, Founder & Executive Director, Montgomery Area Reproductive Justice Coalition (MARJCO)

Amanda Reyes, Executive Director, Yellowhammer Fund

Terri Sewell, U.S. Rep. (AL-07)

Sarina Stewart, LMSW, Social Work Manager, Dallas County Health Department

Suzanne Terrell, LMSW, Assistant Administrator, Dallas County Health Department

Medical Advocacy & Outreach (MAO) Staff:

Marguerite Barber-Owens, MD, AAHIVS

Laurie Dill, MD, AAHIVS, Medical Director

Stephanie Hagar, LBSW Lead Administrative Social Worker

Rozetta Roberts, NP, Clinic Director

Dianne Teague, Governmental/Donor Affairs

Jennifer Thompson, LICSW, Division Manager of Social Work

K.C. Vick, Director of Capacity Building

KFF: Usha Ranji, Michelle Long, and Alina SalganicoffHealth Management Associates: Carrie Rosenzweig and Sharon Silow-Carroll

Introduction

The state of California has a wide range of legal protections for reproductive health care access and coverage. Its decision to expand its Medicaid program, Medi-Cal, through the Affordable Care Act (ACA) greatly broadened health insurance coverage for its low-income populations, and the state’s Family PACT program ensures coverage for family planning services to uninsured women up to 200% of the federal poverty level (FPL). California requires that Medicaid and private insurance plans cover abortion. However, these coverage protections have not guaranteed equal access in all parts of the state. Tulare County sits in the Central Valley, the heart of the agricultural region of California. The majority of its population is concentrated in a few small cities in an otherwise sparsely populated county. The area is more politically and socially conservative than many parts of the state. As one of the poorest counties in California, Medicaid expansion has been a significant source of coverage for low-income individuals living there. Still, the area is federally designated as medically underserved and as a health professional shortage area, and residents can face significant barriers in accessing basic health care and family planning services. Tulare County’s rates of some sexually transmitted infections (STIs) and teen pregnancy are much higher than the state average. Tulare County’s large migrant worker, immigrant, and Latinx populations, as well as individuals who identify as LGBTQ, face heightened barriers to care.

This case study examines access to reproductive health services for low-income women in Tulare County, California. It is based on semi-structured interviews conducted in March and April 2019 by staff of KFF and Health Management Associates (HMA) with local safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates, as well as a focus group with Spanish-speaking, low-income women living in the community. Interviewees were asked about a wide range of topics that shape access to and use of reproductive health care services in their community, including availability of family planning and maternity services, provider supply and distribution, scope of sex education, abortion restrictions, and the impact of state and federal health financing and coverage policies locally. An Executive Summary and detailed project methodology are available at https://www.kff.org/womens-health-policy/report/beyond-the-numbers-access-to-reproductive-health-care-for-low-income-women-in-five-communities.

Medicaid Coverage

Many Tulare County residents live in extreme poverty, and there are a significant number of immigrants, including many monolingual Spanish speakers. These communities face serious barriers to health care despite the availability of expanded coverage under Medicaid and the state family planning program.

California’s decision to expand Medi-Cal provided broad coverage to many who were formerly uninsured and drastically reduced the uninsured rates in the state; however, gaps remain for undocumented individuals. The 2013 Medicaid expansion greatly increased coverage in Tulare County. California’s Medicaid program covers parents with incomes under 138% of the Federal Poverty Level (FPL), and pregnant women up to 322% FPL under the CHIP “unborn child” option.¹⁰  California also extends coverage for family planning services to men and women with incomes below 200% FPL through the Family PACT program, which serves as a major revenue source for clinics serving low-income women across the state. However, several women who participated in the focus group, many of whom were previously undocumented, had not heard of the Family PACT program or did not know that they were eligible for its family planning services. Federally Qualified Health Centers (FQHCs) in the area reported that they still see a significant number of patients who are uninsured, usually because of documentation reasons. Among women of reproductive age in Tulare County, approximately seven in ten are Latinx and nearly three in ten are foreign-born (Figure 1). Agriculture is the dominant industry in the region, and the county is home to many farm workers and their families. In June 2019, following the site visit, California became the first state to expand full Medi-Cal benefits with state-only funding to low-income, undocumented adults ages 19-25, expected to take effect in 2020.

Provider Distribution

Tulare County’s large area and lack of public transit make it difficult for women to travel to larger towns for health care appointments. While prenatal and contraceptive care are generally accessible in the county, there is a significant shortage of providers of specialty care and even fewer specialists who accept Medicaid.

Tulare County is an expansive county, about the size of Connecticut, with a sizable rural footprint. There are provider shortages in the more rural areas, and services are concentrated in the larger towns. Outlying areas that are farther away from the population centers in Tulare and Visalia have limited or no public transportation options, which reduces access to health care services for residents without cars. Interviewees also reported difficulty recruiting doctors to live and work in the area. Some FQHCs are trying to improve access and expand their presence throughout the county using mobile units, satellite clinics, and a transportation fleet to bring patients to and from their appointments free of charge. However, they acknowledge it is not financially viable to build clinics in outlying communities with 100 people (or fewer), and some interviewees suggested that patients do not always know about available transportation services; for example, Medicaid covers transportation to medical appointments in certain cases. The combination of geographic distance, limited public transportation and knowledge of available services means that it is difficult for people in some outlying communities to obtain care.

Focus group participants reported that prenatal care is readily accessible, though their provider choices are limited. Some interviewees expressed that while there may be enough Ob-Gyns in the county, they are not evenly distributed, and the range of Ob-Gyns does not fully meet patient preferences. For example, interviewees and women in the focus group said that the field is male-dominated in the area, and the few doulas and midwives in the county, who are generally female, are overbooked. FQHCs suggested telehealth could help, but they do not currently use this technology for reproductive health or obstetrics. One interviewee commented that there are limited obstetric specialists, so providers refer patients to nearby hospitals for specialty care; however, recent hospital closures have reduced the number of obstetric departments in the area. As in other communities, many private providers do not accept Medi-Cal due to the state’s low reimbursement rates, which are among the lowest in the nation. One interviewee suggested this creates a “two-track system” in which patients with Medicaid are limited to a smaller number of providers.

 Women have access to a variety of contraceptive providers, but limitations remain. Women can get same-day contraception from several FQHCs and a Planned Parenthood clinic in the area. The two county public health clinics also offer some contraceptive services. Planned Parenthood in Visalia was identified by multiple interviewees as the most comprehensive, and the only specialized provider of contraception; however, Planned Parenthood is only open three days a week with limited hours. These limitations are particularly exacerbated for residents in the outlying areas of the county who have to travel farther to get care. In California, pharmacists can prescribe and provide some hormonal contraception (oral contraceptive pills, the patch, injection, and the ring) directly to women. One interviewee noted that pharmacies are one of the “cornerstones” of access in the community, but that not many pharmacists in the area participate in the program due to personal beliefs. A local social justice organization that conducts “secret shopping” at local pharmacies to identify barriers to obtaining emergency contraception (EC) has greatly improved access. Cost is still a barrier since EC costs $40-60 without a prescription, but it is also available at local FQHCs and Planned Parenthood on a sliding fee scale.

Mental health needs are not being met within the community. Although many focus group participants had suffered from anxiety and depression, they said that doctors only talk to them about it when they are pregnant. Long wait times for appointments at the limited number of mental health providers in the county is a barrier to care. One interviewee reported there is a two-month wait for a pediatric mental health assessment, though the victims’ services provider can offer counseling for children who have been exposed to violence, or experienced neglect, endangerment, or abuse within about two weeks. Adults can get mental health services in Visalia or Kingsview, but these services reportedly focus on severe mental health diagnoses only.

Sex Education and STIs

The availability of sex education in the schools is limited in the region despite robust state requirements. Nurses play a large role in educating their patients about sexually transmitted infections (STIs).

Sex education is not consistently taught across the 45 school districts in the county despite a state mandate that schools provide comprehensive sex education. Interviewees report a lag between the state’s passage of legislation and implementation on the ground due to limited resources and lax oversight. The local school board is also resistant to sex education, tied to strong conservative and anti-abortion Roman Catholic influences in the community. Tulare-Kings Right to Life has historically provided abstinence-only sex education in the schools; many interviewee and focus group participants noted this limited curriculum does not offer young people the information they need to make fully informed decisions about their health. Some also noted that as sex education comes into compliance with state law, some parents are choosing to opt their children out of the more comprehensive programs. One interviewee described backlash when an advocacy organization handed out condoms at a high school prom and performed rapid HIV testing at a homelessness event.

Health educators and nurses at local clinics play an important role in educating women about STIs and their contraceptive options. FQHC nurses reported that their patients are uneducated about their sexual health and are often surprised when they learn about STI symptoms and risk factors. However, providers feel limited in their reach because they are only able to educate people who walk into their clinic. On the other hand, focus group participants did not think that providers sufficiently discuss STIs with them. They reported receiving pamphlets but stated they would prefer in-person counseling with reader-friendly guides.

In recent years, the county has experienced a rising rates of some STIs, especially syphilis and HIV. Providers have seen an influx of new STI diagnoses (Figure 2), especially among young people. Some attribute this to the small communities of students who are dating each other. Interviewees had mixed views about whether there are enough providers offering STI or HIV testing in the county. One interviewee suggested that many providers do not test for syphilis, and as a result, Tulare County experienced a large outbreak a few years ago; one provider reported they are still seeing one new case of syphilis each week on average. Clients diagnosed with HIV are often 20-25 years old and mostly male. Another provider suggested that most of the testing happens at the county public health clinics where there are concerns about confidentiality and a mistrust of some providers. Sometimes there is also a fear among patients of being “put on a list” [related to immigration] resulting in people going without care.

Access for Special Populations

Undocumented immigrants, people in remote areas, women experiencing domestic violence, LGBTQ individuals, and teens face increased barriers to health care. Tulare County has a variety of community organizations that offer innovative programs focused on improving access for many of these populations.

Immigrants

Barriers affecting low-income women living in Tulare County are amplified for undocumented women. They face additional challenges related to language, costs, and confidentiality. While most of the region’s population is Latinx (65%), there are a number of smaller immigrant communities, including from South and Southeast Asia. Interviewees said that most providers have materials in Spanish and interpretation services or Spanish-speaking staff, but they often do not have the capacity to provide intepretation services for the community’s Southeast Asian populations. Furthermore, providers reported that interpretation in all languages, including Spanish, for ongoing services such as case management is challenging. Many women bring in family members or friends to interpret for them, but providers expressed concern about confidentiality, especially in smaller communities.

Undocumented individuals delay or avoid seeking health, social, or financial services. They may limit their time outside because they fear deportation or a negative impact on their legal status. Multiple interviewees reported that racism and fear of ICE raids have increased in recent years. Several focus group participants recounted experiences in which they delayed or went without health or pregnancy-related care because they were undocumented and afraid of deportation. Women seeking legal status have also forgone needed public assistance, fearing being seen as a “public charge” and jeopardizing the immigration process. There have been ICE raids on domestic violence shelters across California, and interviewees said that women who call to report abuse will not seek services for fear of deportation.

Undocumented women in California are eligible for emergency Medicaid coverage of labor and delivery, but their eligibility for Medicaid ends after childbirth. However, under the state’s new expansion of Medi-Cal benefits to young adults 19-25, some would remain eligible for coverage. Several women in the focus group became uninsured following delivery or the 6-week follow up visit. As a result, they did not seek additional care for themselves because they were not covered and felt they could not afford it.

Poverty and Access in Outlying Areas

Women in the focus group and other interviewees reported that poverty is disproportionately hard on women and plays a role in access to contraception. Visalia, Tulare, and Porterville are the largest towns in the county, but a significant portion of the population lives in unincorporated communities that may not have a grocery store, pharmacy, or health clinic. This leaves many women without even a place nearby to purchase condoms. Some smaller communities do not have running water. Many residents are under- or unemployed and cannot afford housing, food, and hygiene items. Social service providers asserted that when women must make a choice among basic needs, their health is low on the list. One interviewee added that multi-generational poverty locks women who are financially dependent or must work multiple jobs into family environments that prevent them from making their own choices, particularly women in abusive or coercive relationships.

Domestic Violence

Domestic violence is prevalent in the area, but there is a shortage of services and lack of appropriate training among health care providers and law enforcement. The largest victims’ services provider in the county operates the only rape crisis center serving Tulare County. They serve about 350 clients a year, 100 of whom require rape kits/forensic exams. They also operate one of the two emergency shelters in the area; the other is religiously affiliated. Both shelters have long waiting lists due to their limited capacity, housing only eight to ten women, many of whom have multiple children. In addition, barriers facing undocumented individuals in seeking health care services, such as fear of deportation, have also prevented women from utilizing shelters.

While screening for domestic violence is recommended as a routine part of primary and prenatal care, health care providers may not screen for it because they do not feel equipped to address the patient’s needs if they disclose abuse. In order to increase domestic violence screening, the victims’ services provider has established operating agreements with hospitals and other health care providers to offer training and education to identify and address domestic violence and abuse among patients. However, they reported implementation challenges at the provider level and that they are not receiving the expected volume of referrals from the clinics.

Most women in the focus group reported that their doctor had discussed domestic violence with them. A few had negative experiences with law enforcement; one focus group participant described how police threatened to remove her children from her custody while she was at the hospital seeking medical attention for injuries due to domestic violence. Because she did not want to accuse her partner, the police implied that the situation was her fault instead of connecting her with resources and support. A few women had positive experiences with police and social workers who helped them obtain the support they needed.

Women who are involved in abusive relationships often experience reproductive coercion. A victims’ services provider and a family resource center reported that women in abusive relationships often experience reproductive coercion where their partners prevent them from using contraception or sabotage their chosen method. As a result, women are not able to make their own reproductive decisions, and many have had multiple children they did not intend to have. These interviewees reported that when they speak to their clients, it is often their first time learning about family planning options and where to obtain those services. Their staff are trained in identifying women and children who might be experiencing abuse.

LGBTQ Individuals

Individuals who identify as LGBTQ in Tulare County experience significant stigma, and interviewees spoke about a severe shortage of culturally competent providers. The stigma that LGBTQ individuals experience plays a large role in discouraging them from seeking appropriate care. This is compounded for LGBTQ individuals who are Latinx, migrant workers, undocumented, or live in the outlying more rural areas. Some interviewees are also concerned that there is a lagging standard of care for this population compared to other metropolitan areas of the state. For example, providers are still drawing blood to test for HIV rather than using a rapid result test which delays results. In addition, some interviewees said that patients are not always aware that they need to request the specific HIV and STI tests they want to receive.

There is reportedly only one provider in the area who provides culturally competent care for transgender patients, but he will not initiate hormone replacement therapy (HRT). Patients seeking this treatment must travel far out of the county to obtain it.

There is a lack of primary care doctors who are trained to prevent HIV among at-risk patients. Preliminary data on HIV rates in Tulare County show a 68% increase from 2017 to 2018.¹¹  California state law requires medical providers to educate patients who are at high risk for HIV infection about methods to reduce their risk, including pre-exposure prophylaxis (PrEP). However, one interviewee asserted that no providers in the Tulare County area are complying with the mandate. There are no self-reported PrEP providers on official listings online, and an interviewee noted that providers in the area refer individuals seeking PrEP to the one infectious disease physician serving patients with HIV, who has a months-long waiting list. Notably, most women in the focus group had not heard of PrEP or its brand name, Truvada. Providers are also not providing expedited partner therapy (EPT) or HIV/STI prevention education. The SOURCE, the single LGBTQ advocacy resource organization in the county, is trying to change this by working with the FQHCs in the area and conducting clinic visits. The SOURCE is also a PrEP Medication Assistance Program site, through the AIDS Drug Assistance Program (ADAP) and Gilead’s PrEP Assistance Program (PrEP AP) which helps under- or uninsured individuals pay for the drug.

Teens

Access to Abortion Counseling and Services

Compared to many other states, there are fewer restrictions on abortion in California; however, access to and cultural attitudes about abortion vary throughout the state. There are no abortion providers in Tulare County, and interviewees and women in the focus group stated that the community is conservative, creating substantial local resistance among both women and providers to the service.

There are no abortion clinics in Tulare County, and there are significant barriers to providing or obtaining these services. The closest clinic providing abortion services is in Fresno, which is at least 50 miles away. Women face barriers related to transportation, cost, stigma, and fear of family members finding out.

Interviewees suggested abortion access is most affected by political and cultural norms, and that anti-abortion groups and crisis pregnancy centers (CPCs), which typically offer limited medical services like pregnancy testing and ultrasounds, and discourage women from seeking abortion services, have considerable local power. Planned Parenthood’s Visalia Health Center has experienced repeated vandalism over the past few years, even though it does not provide abortion services. Local FQHCs fear losing federal funding if perceived as supporting abortion. One interviewee remarked that there is significant bias against abortion among providers and believes that most do not discuss or provide referrals for abortion. Some providers are aware of the potential impact of the new Title X regulations that ban Title X funds from going to providers who offer or refer for abortion services. However, they do not think it will have much of an impact in their community because, “no one is really doing those activities now.”

Half of the focus group participants knew where they could get an abortion, though some suggested that many in the Latinx community oppose abortion. One woman had a friend who wanted an abortion but could not get one because it was too expensive; in the end, she gave birth and placed the baby for adoption. Another woman said she decided to have her provider induce a “miscarriage” after she found out her fetus was developing abnormally, but later doubted her decision. A Title X provider remarked that “we don’t get that many women who want to terminate their pregnancy,” though many interviewees reported a general lack of knowledge and education about abortion as an option.

Conclusion

California is known for its progressive policies and has extensive protections for health care coverage including family planning and abortion; however, many residents of Tulare County lack access to these services. While the county has a large Medicaid-eligible population, the shortage of providers, particularly specialists and abortion providers, presents barriers to sexual and reproductive health care. In addition, the region’s rural population has little access to public transportation, and faces extreme poverty, making it difficult to afford even basic items. The county’s large Latinx immigrant community, many of whom are undocumented migrant workers, faces heightened challenges; they are often deterred from seeking care due to language barriers, ineligibility for public programs, and a fear of deportation. There is limited support for women experiencing domestic violence, and many face barriers to leaving violent relationships. All these obstacles are amplified for undocumented individuals without health coverage and who fear deportation, and for those who identify as LGBTQ dealing with stigma and a lack of culturally competent providers.

Acknowledgements

The authors thank all of the individuals that participated in the structured interviews for their insights, time, and helpful comments. All interviewees who agreed to be identified are listed below. The authors also thank the women who participated in the focus groups, who were guaranteed anonymity and thus are not identified by name.

Angel Avitia, Assistant Director, Tulare County Family Resource Center Network

Gabriela Beltran, Title X Patient Care Coordinator, Altura Centers for Health

Brandon Foster, PhD, Chief Quality and Compliance Officer, Family HealthCare Network

Erin Garner-Ford, Executive Director, ACT for Women and Girls

Raquel Gomez, Director of Community Initiatives, Tulare County Family Resource Center Network

Caity Meader, CEO, Family Services of Tulare County

Brian Poth, Executive Director, The Source

Leonora Sudduth, RN, Title X Nurse, Altura Centers for Health

Dawn Wells, Grants Specialist, Altura Centers for Health

KFF: Usha Ranji, Michelle Long, and Alina SalganicoffHealth Management Associates: Sharon Silow-Carroll and Carrie Rosenzweig

Introduction

Over the past couple of decades, Missouri has increasingly become a battleground for reproductive rights and health services. The state has passed a number of regulations that restrict access to reproductive care, and in May 2019, along with several other states, the Republican-controlled Missouri state legislature passed a law banning abortions after 8 weeks. As of this publication, it is temporarily blocked by a federal judge as a legal challenge plays out in court. State regulatory policies and enforcement actions put Missouri at risk of becoming the first state with no operating abortion clinic since Roe v. Wade was decided in 1973. In addition to restrictions on abortion access, Missouri has not expanded Medicaid eligibility under the ACA.

In contrast to the rest of the state, St. Louis stands out as a liberal area, electing Democrats as mayor of the City of St. Louis and to the state senate and House of Representatives.¹²  The St. Louis metropolitan area (Figure 1) is highly segregated and deep health disparities exist between black and white residents. The region is federally-designated as medically underserved and as a health professional shortage area. One recent study found that there was an 18-year difference in life expectancy between the wealthier, predominantly white, suburbs of Clayton and North St. Louis City, a majority Black area less than 10 miles away. St. Louis also has a large Catholic population and concentration of Catholic-affiliated hospitals and schools, which shape how local health systems offer sexual and reproductive health services and education.

This case study examines access to reproductive health services among low-income women in St. Louis City and County, Missouri. It is based on semi-structured interviews conducted by staff of KFF and Health Management Associates (HMA) with a range of local safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates, as well as a focus group with low-income women during March and April 2019. Interviewees were asked about a wide range of topics that shape access to and use of reproductive health care services in their community, including availability of family planning and maternity services, provider supply and distribution, scope of sex education, abortion restrictions, and the impact of state and federal health financing and coverage policies locally. An Executive Summary and detailed project methodology are available at https://www.kff.org/womens-health-policy/report/beyond-the-numbers-access-to-reproductive-health-care-for-low-income-women-in-five-communities.

Medicaid Coverage and Continuity

Missouri’s decision not to expand Medicaid, its policies restricting Medicaid reimbursement for providers that offer both contraception and abortion services, as well as the establishment of a state-funded family planning program that excludes providers who offer abortion services and their affiliates, have extensive implications for women’s access to sexual and reproductive health and maternity care. A temporary health care program for low-income adults in St. Louis helps fill some of the gaps in coverage and access to care.

Missouri chose not to adopt the Affordable Care Act’s Medicaid expansion. Medicaid enrollment has declined dramatically over the past year, causing coverage gaps and discontinuity of care for women and children. Missouri’s Medicaid program (Table 1), MO HealthNet, covers parents with incomes under 21% of the Federal Poverty Level (FPL), and pregnant women up to 305% FPL under the Children’s Health Insurance Program (CHIP) “unborn child” option (Show-Me Healthy Babies).¹³  Adults who are not parents are not eligible unless they are low-income and seniors or have a disability. Missouri’s Women’s Health Services program provides family planning services for women ages 18-55 who are ineligible for full Medicaid, with incomes up to 206% FPL, as long as they seek care at a family planning provider that does not also offer abortion services. Coverage gaps for women who do not qualify for Medicaid or who lose coverage due to small changes in income disrupt continuity of care and create barriers to family planning and other health care services (Figure 2). MO HealthNet enrollment declined roughly 9.5% from May 2018 to May 2019 (Figure 3), the steepest drop in Medicaid and CHIP coverage across all states. Missouri’s state government argues this decline is due to improvement in the economy, but a study by the Center for Children and Families at the Georgetown University Health Policy Institute suggests it resulted at least in part from flawed redetermination processes.

In St. Louis City and County, uninsured adults living at or below 100% FPL, who do not qualify for Medicaid, can apply for the Gateway to Health program, a federal demonstration program that provides temporary coverage. Benefits include primary care, generic prescriptions, substance use treatment, and specialty care referrals to contracted health centers. There are no premiums and copays are no more than $3.00.

Lack of Medicaid expansion creates barriers to postpartum care. Missouri’s Medicaid income eligibility threshold for parents (21% FPL) is considerably lower than for pregnant women (305% FPL). Pregnancy-related coverage ends 60 days after delivery, so many poor women whose incomes exceed the 21% FPL threshold for parents (roughly $4,500 a year for a family of three) lose coverage two months after delivery. Furthermore, women with incomes below the federal poverty level are not eligible for subsidies to purchase private coverage through the ACA’s health insurance marketplace, meaning that many poor women do not have a pathway to coverage and become uninsured. One provider lamented that they are only able to see women once they are pregnant, but then must “drop them when they lose coverage.” There is no automatic enrollment into the state-funded family planning program for women who lose full Medicaid coverage, leaving many low-income women without coverage for needed contraceptive services after they have a baby. Providers suggested that the Federally Qualified Health Centers (FQHCs) in the area are positioned to provide ongoing care to women who lose their Medicaid coverage, but reported some FQHCs are facing steep financial challenges. In July 2019, the state announced plans to submit a Section 1115 Demonstration waiver to CMS that, if approved, would allow low-income women who have recently given birth and are diagnosed with a substance use disorder (SUD) to maintain coverage for SUD and related mental health treatment, including transportation to appointments, for up to 12 months following the end of their pregnancy benefits.

State policies bar Medicaid reimbursement for services obtained from providers who offer or are affiliated with abortion services. This reduces access to contraception for low-income women. To exclude abortion providers from participating in its Medicaid family planning program, in 2016, Missouri replaced its federal family planning waiver program with a state-funded family planning program called the Women’s Health Services Program. This program denies reimbursement to any organization that performs or counsels on abortion regardless of the other services that are provided. Additionally, in 2018, Missouri enacted legislation that denies Medicaid reimbursement to abortion facilities or their affiliates regardless of the other services that are provided.

Planned Parenthood of the St. Louis Region (PPSLR) had not received reimbursement for any of the Medicaid beneficiaries they served since July 2018, which makes up a significant portion of their budget. However, a state court judge ruled in June 2019 that Missouri unlawfully restricted Medicaid payments to abortion providers for non-abortion services and ordered the state to restore reimbursements to PPSLR.¹⁴  Medicaid reimbursement restrictions also create confusion among health care providers, which one interviewee suggested causes fewer providers to participate in the state family planning program even if they are qualified. Between June 2018 and May 2019, enrollment in the Women’s Health Services Program dropped by almost 12,000 members, or almost 19% (Figure 3).

These policies also threaten the financial stability of clinics that provide free or affordable contraception to low-income women, even if they do not provide abortion. For example, the Contraceptive Choice Center (C3), part of the Washington University School of Medicine in St. Louis, was excluded from the state family planning program due to its affiliation with a hospital that provides abortions in cases of severe fetal anomalies or when a woman’s life is in danger.

The state’s Title X clinics may be strained after the Trump Administration’s new program rules are fully implemented. In addition to Medicaid, funds from the federal Title X family planning program support clinics that provide services to low-income women. In March 2019, the Trump Administration issued new rules barring Title X funding from organizations that provide or refer for abortion. At that time, a C3 clinic interviewee stated that should the new rules be implemented, the clinic may have to shut down entirely. Since the time of the interview, the rule has gone into effect and Planned Parenthood has withdrawn from Title X nationwide; the effect on C3 remains to be seen.¹⁵ 

Focus group participants cited cost as a major barrier to health insurance coverage and care. Most focus group participants reported that they are getting their basic health needs met, but a few uninsured women are going without some types of health care such as preventive care, dental care, mental health services, or their preferred method of contraception. For uninsured women, the cost of birth control ranged from $25 to $48 per month. One focus group participant said she wanted to change methods but could not afford the $170 appointment to have her intrauterine device (IUD) removed, and another could not afford a tubal ligation she desired.

Provider Distribution and Religious Health Systems

Provider distribution remains a problem in the St. Louis area, especially in low-income areas, and the prevalence of faith-based hospitals may cause delays in care. While overall there are sufficient numbers of providers offering affordable contraceptive and pregnancy-related care, maldistribution of providers translates into access problems for many women.

While interviewees reported there are enough providers of publicly-funded contraception within the city limits, they do not feel that they are distributed equitably throughout the county. Interviewees identified provider shortages in North City and North County, areas that are majority low-income and African American, and in other pockets of poverty throughout the county. There are four Title X providers in St. Louis, but there is no public hospital in the area; this need is primarily filled by private or faith-based hospitals. Some reported that there is also a lack of providers trained in long acting reversible contraception (LARC) insertion in publicly funded clinics.

Several health care leaders stated that there is insufficient capacity to meet the demand for sexually transmitted infection (STI) testing and treatment in the face of high and increasing rates of syphilis, chlamydia, and gonorrhea. Following nationwide trends, rates of STIs are increasing in St. Louis, with the highest prevalence among people living with HIV, African Americans, and youth ages 16 to 24. Access to STI testing and treatment is limited by a lack of affordable providers and decreasing federal and state funding. After the city health department closed its STI clinics in the early 2000’s, the county clinic in North County became the only public provider in the area, with lines out the door on most of their STI clinic days. Focus group participants reported that men in particular are not receiving adequate STI testing and treatment services because they are not as connected with the health system and usually ineligible for Medicaid. Therefore, most are not getting preventive care or education about STI prevention, which reduces the likelihood they will seek treatment if they have an infection.

Interviewees and focus group participants felt that there was generally an adequate supply of providers for pregnancy and postpartum services in the St. Louis region and that access was better than in the rest of state. Overall, women participating in the focus group participants reported having positive experiences at the hospitals where they received maternity care and felt their physicians understood their cultural beliefs. They also reported their physicians discussed contraceptive options with them during the 6-week postpartum visit. The County Health Department is a service site for the Nurse Family Partnership program, one of the local programs that makes home visits to low-income first-time mothers and has been effective in improving the utilization of contraceptives during the postpartum period.

Religious health systems do not offer most methods of contraception, but clinicians affiliated with those systems often refer to other providers for a broader range of options. Most focus group participants had received care from one of the area’s many Catholic hospitals, and they did not report any significant impact on their reproductive health care. Although they knew that these hospitals would not perform tubal ligations, they said that their physicians shared information about contraceptive methods and would provide referrals to other hospitals or clinics where they could obtain these services. None of the women knew that there was a non-religiously affiliated hospital in the area. Community stakeholders similarly reported that individual providers affiliated with religious health systems may refer to other providers for contraceptive services not permitted by their institution.

Contraceptive Provision, Access, and Use

Overall, interviewees felt that women living in the St. Louis region can obtain their preferred method of contraception, but cited barriers related to transportation and poverty. They also noted that a lack of comprehensive sex education can impede knowledge of the full range of methods. Several promising efforts are underway to address these barriers and improve access for low-income women.

Family planning providers offer a wide range of contraceptive choices including IUDs and implants, but certain Medicaid policies challenge their ability to offer same-day or timely access to LARCs. Most providers reported they offer comprehensive family planning services. Missouri’s state Medicaid program covers LARC at the time of delivery with a separate provider reimbursement to promote immediate postpartum LARC insertions. Interviewees reported, however, that some hospitals are not aware of this policy or need additional training in LARC insertion to make this option fully available after delivery. Furthermore, several providers noted that Medicaid policies governing payment for LARC cause delays that prevent same-day access. These policies include preauthorization and utilization requirements that limit a patient to one LARC device per FDA-approval period for the device (e.g. up to five years for a Mirena IUD), and policies tying LARC devices to a specific patient. As a result, most patients must return for a second appointment to get their device inserted, and many interviewees reported instances of patients missing appointments or getting pregnant before they are able to return. One focus group participant explained she had to wait three months for her IUD to be delivered because of Medicaid’s pre-authorization requirement. Many clinics cannot afford the high upfront costs to stock LARCs onsite, which would facilitate same-day access for women seeking those methods. In 2018, legislation was passed that allows a provider to transfer a new, unused LARC to a different MO HealthNet patient instead of discarding it. However, one provider noted that there were not yet any guidelines from the state to define or help facilitate that process.

While most focus group participants reported that they can get contraception, many described barriers to getting the methods they want, when they want them. Several focus group participants said they are happy with the treatment they receive from their providers when seeking contraception and are familiar with a wide range of contraceptive methods. However, it can take multiple visits and long wait times between appointments is common. One woman who now goes to a public health clinic after losing her private insurance said she has been waiting months for an appointment because of staff shortages due to furloughs. Several focus group participants had experienced negative side effects from hormonal methods that resulted in their changing or discontinuing contraception. Focus group participants were knowledgeable about emergency contraception, and four had used it in the past. They said it is available at drug stores, but that they must ask for the pharmacist to take it out of a locked case, creating additional barriers to access.

Some low-income women experience financial, logistical, and language barriers to accessing family planning services. Poverty and other socioeconomic factors also affect sexual health outcomes. Interviewees noted a lack of reliable public transportation, scheduling conflicts, long waiting times for appointments, and lack of interpretation services as barriers to care. Providers stated that the safety net was over capacity, with six to eight-week wait times for a women’s health appointment for new FQHC patients. One focus group participant liked that her usual place of care had extended hours during the evening, so she could go after work. Factors such as unstable housing, lack of transportation, poverty, and a lack of education were raised as challenges for low-income women, and these are fundamentally intertwined with sexual and reproductive health services.

Clinicians face time constraints during family planning visits, and some are influenced by their own beliefs or outdated standards of care. Several clinic staff mentioned that clinicians do not have enough time to provide in-depth contraceptive counseling given the clinic flow and the level of demand. Likewise, focus group participants reported that the physicians are too busy to spend much time with them. Lack of provider training and misinformation also impede family planning access, especially around LARC provision. Some providers still adhere to outdated protocols restricting IUD use for women who have not had children. Others may not be providing comprehensive counseling on the full range of methods due to their own cultural or religious beliefs. One interviewee reported that there may be variation within organizations, with pushback from some individual providers and nursing staff regarding the use of LARCs or emergency contraception.

Sex Education Policy and Provision

Sex education in schools is not mandated and varies by district. “Abstinence-plus” is the most common approach. In 2007, Missouri passed a law that prohibited school districts from allowing a person or an organization to offer sex education or related materials to its students if they provide or refer to abortion services. One interviewee said that this policy leads to a lot of confusion and individual interpretation at both the administrative and teacher level. It also opens the door for faith-based organizations, such as Crisis Pregnancy Centers (CPCs), which often do not offer a medically-accurate, comprehensive curriculum, to step in. While parent pushback resulted in some schools no longer using CPCs to provide sex education, other schools reportedly continue to use “abstinence only” education or “abstinence-plus” curricula, which stress abstinence but also include information on contraception and condoms. PPSLR offers comprehensive sex education at no cost to hundreds of partners a year, but interviewees say the rule barring abortion providers from offering sex education in schools has a chilling effect despite their legal separation from Reproductive Health Services (RHS), the Planned Parenthood clinic that conducts abortions. Interviewees and focus group participants agree that as a result, youth are not adequately informed of sexual health risks or ways to prevent unintended pregnancy and STIs. Focus group participants believed that most young women rely on their friends for information, and that the gaps in sex education results in teen pregnancies.

Access to Abortion Counseling and Services

Abortion is highly regulated in Missouri, and women face significant barriers to accessing abortion counseling and services.

The only clinic that provides abortions in the state of Missouri is in St. Louis. Women are increasingly crossing state lines to seek services at clinics in Illinois where there are fewer state restrictions. As of November 2019, RHS of PPSLR, located in the city of St. Louis, is the only clinic providing abortions in Missouri, down from three clinics in 2018.^16 ,17  Notably, there is no access to medication abortion in Missouri. RHS provides surgical abortion services, but stopped providing medication abortion because Missouri regulations require providers to conduct a pelvic exam prior to medication prescription; RHS providers consider this medically unnecessary and unethical. Instead, they refer women seeking medication abortion to a Planned Parenthood clinic in Illinois. Consequently, more women are reportedly going across the river to the Planned Parenthood and Hope Clinic for Women, an independent provider, in Illinois, where there are fewer state restrictions including no waiting period. Planned Parenthood is expanding services in their southern Illinois facility to help meet demand for the surrounding region. While access is difficult in St. Louis City and the surrounding county, interviewees agree that access is significantly harder in the rest of the state where there are no nearby abortion providers, and women may have to travel up to five hours to St. Louis for care.

Focus group participants reported that cost is the largest barrier to abortion care but that many other abortion-specific restrictions also make abortion access challenging. Focus group participants said the cost for the abortion pill is between $500 and $600, and surgical abortion costs around $700, making it out of reach for many women. They also cited other barriers such as transportation, a shortage of providers, and regulations such as the 72-hour waiting period, mandated informed consent counseling, parental consent for minors, and gestational age limits. Some focus group participants felt the state-mandated counseling was intended to make them second guess their own decisions. A few focus group participants were well informed about the state’s abortion laws, and most felt that it was getting harder to get an abortion in Missouri. Some women said they have gone to neighboring clinics in Illinois where there are fewer restrictions.

The volume of state and federal restrictions on abortion have a profound impact on providers and the low-income women they serve. Providers reported that the 72-hour waiting period coupled with the rule that requires the same physician to conduct the informed consent and the procedure three days later are especially burdensome. As a result, RHS had to reconfigure their scheduling to accommodate these policies, losing four providers who could no longer fit it into their schedule. The new Title X rule, which blocks funding for family planning providers who refer women for abortions, is confusing to providers regardless of whether they participate in the Title X program; they reported that when the rules constantly change, they are wary of even providing a referral for abortion. One interviewee reported that FQHC providers have been told never to talk about abortion and are worried about doing anything that would put their federal funding in jeopardy.¹⁸  One provider noted that the media mainly discuss the rule’s impact on Planned Parenthood affiliates but believes there would be a much more dramatic effect on other providers, either because they would not want to comply with the rules and choose not to participate in the Title X program, or they were not able to participate. This would mean that they would lose an important source of funding to provide family planning services to poor and uninsured women.

Abortion providers and women who utilize their services feel stigmatized and sometimes fearful by the political and social barriers they face in providing and seeking abortion care. Stigma, intimidation, and fear about confidentiality serve as major barriers to women seeking abortion services. There are protestors outside PPSLR and RHS daily, and focus group participants reported that these protestors make them feel afraid and ashamed of their decisions. Crisis pregnancy centers (CPCs), which typically offer limited medical services like pregnancy tests and ultrasounds, and discourage women from seeking abortion, have a large presence in the area. Abortion providers also face a series of obstacles, including myriad state restrictions (see Appendix) and significant cultural and political stigma. One clinician noted she chose not to provide abortion services because the associated stigma would make it difficult for her to be effective in other areas of health care and state health policy due to the political environment. Another interviewee said their organization is seeking long-term political solutions such as the “Clean Missouri” bill that addresses gerrymandering in the state to help elect officials who are supportive of reproductive health and abortion services.

Conclusion

While St. Louis has an extensive network of family planning and maternity providers, women who live in the poorest areas of the city and county are especially disadvantaged due to the dearth of providers in their communities and the lack of reliable public transportation to clinics in other areas. Several organizations in the region have undertaken efforts to expand access to contraception, especially to highly-effective, long-acting methods such as IUDs and implants. However, there is a large contrast between the efforts to improve access in St. Louis and state-level policy decisions that have targeted family planning providers that also offer or are affiliated with abortion providers. Providers said that these policies limit their ability to participate in programs like the state family planning program and Title X. The state’s decision not to expand Medicaid and recent efforts to further restrict access to abortion have not only significantly reduced the availability of abortion services, but also have had an impact on contraceptive access, STI care, and other basic health services. More women are reportedly choosing to travel to Illinois for abortion services, where they have far fewer restrictions on abortion.

Acknowledgements

The authors thank all of the interviewees for their insights, time, and helpful comments. All interviewees who agreed to be identified are listed below. The authors also thank the focus group participants, who were guaranteed anonymity and thus are not identified by name.

Meg Boyko, Executive Director, Teen Pregnancy & Prevention Partnership

David Eisenberg, Board-Certified Ob-Gyn and Former Medical Director, Planned Parenthood of St. Louis Region (PPSLR)

Linda Locke, Board President, (PPSLR)

Tessa Madden, MD, MPH, Contraceptive Choice Center (C3), Washington University School of Medicine

Katharine Mathews, MD, MPH, MBA, Associate Professor and Research Division Director, Department of Obstetrics, Gynecology, and Women’s Health, Saint Louis University School of Medicine

Thomas McAuliffe, Director of Health Policy, Missouri Foundation for Health

Tim McBride, PhD, Professor and Co-Director of Center for Health Economics and Policy, Institute for Public Health, Washington University in St. Louis

Colleen McNicholas, DO, Chief Medical Officer, PPSLR

Katie Plax, MD, Medical Director, Supporting Positive Opportunities with Teens (The SPOT), Washington University in St. Louis

Angie Postal, Vice President, Education, Policy, and Community Engagement, PPSLR

Becky Schrama, MA, BSN, RN, Public Health Nursing Manager, St. Louis County Department of Public Health

Melissa Tepe, MD, MPH, FACOG, VP/CMO at Affinia Healthcare, St. Louis, MO

Michelle Trupiano, MSW, Executive Director, Missouri Family Health Council, Inc.

Appendix

KFF: Usha Ranji, Michelle Long, and Alina SalganicoffHealth Management Associates: Rebecca Kellenberg, Carrie Rosenzweig, and Sharon Silow-Carroll

Introduction

The Crow reservation is the geographically largest Native American reservation in Montana, and home to approximately 8,000 members of Crow Nation, about 75% of the total enrolled membership. Located about 60 miles southeast of Billings, the reservation covers most of Big Horn County, but a small portion extends into Yellowstone County. The Crow Tribal Council governs the Nation, and Indian Health Services (IHS) is responsible for providing health services, although other coverage options and providers are also utilized. Montana offers coverage for reproductive health services for low-income women through its Medicaid expansion program¹⁹  and its Plan First family planning Medicaid waiver. These programs have had a significant impact in a community with high unemployment and poverty rates (Figure 1) and where stark health disparities between the white and Native American populations persist.

Although Montana maintains many policies that protect access and coverage for reproductive health services, Crow women living on the reservation face sociodemographic, systemic, and cultural barriers that prevent many from readily accessing services. In many parts of the reservation, the nearest health care provider is an hour drive away; yet, transportation is not readily available in this low-income, rural community, which is federally-designated as medically underserved and as a health professional shortage area. IHS operates a hospital and two health clinics on the reservation, but a legacy of mistrust of IHS, long wait times, and confidentiality concerns prevent some Crow women from using their services. Some of these themes, particularly concerns about confidentiality, are common in small, rural communities across the country, and are not limited to the Crow reservation. While IHS offers a wide range of services including behavioral health, obstetrics and gynecology (Ob-Gyn), dental care, and surgery, pregnant women must transfer to Billings for labor and delivery. Traditional and religious beliefs prevent many Crow women from talking openly about sexual health, which may contribute to high rates of sexually transmitted infections (STIs) and teen pregnancy, and many consider abortion taboo or do not consider it an option when faced with an unplanned or unintended pregnancy.

This case study examines access to reproductive health services for low-income residents of the Crow reservation, Montana. It is based on semi-structured interviews conducted June–July 2019 by staff of KFF and Health Management Associates (HMA) with a range of local safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates. We also conducted a focus group with low-income women. Interviewees were asked about a wide range of topics that shape access to and use of reproductive health care services in their community, including availability of family planning and maternity services, provider supply and distribution, scope of sex education, abortion restrictions, and the impact of state and federal health financing and coverage policies locally. An Executive Summary and detailed project methodology are available at https://www.kff.org/womens-health-policy/report/beyond-the-numbers-access-to-reproductive-health-care-for-low-income-women-in-five-communities.

Indian Health Service and Medicaid Coverage

Medicaid expansion has played a significant role in improving coverage rates for Native Americans in Montana, which has allowed Crow tribal members to access a broader set of services and providers beyond those available at IHS. The additional funding provided through the expansion program has also allowed IHS Service Units to expand their scope of services, a move that is essential to addressing the tremendous disparities in health for native women of reproductive age.

The Indian Health Service (IHS) provides health care services to Native Americans, including the Crow tribe, at no-cost. Nationwide, IHS services are administered through 12 area offices and 170 IHS and tribally managed service units, and 41 urban Indian health programs including hospitals, health stations, and clinics. As of April 2019, IHS served 2.56 million Native Americans. The Crow Service Unit has three sites on the reservation: the Crow/Northern Cheyenne Hospital located at the Crow Agency headquarters, the Lodge Grass Health Clinic, and Pryor Health Station. There is also an Urban Indian Health and Wellness Center in Billings. Because IHS-funded services are paid in full by the federal program, focus group participants expressed that out-of-pocket cost is not an issue for them despite high levels of poverty on the reservation. However, IHS staff did discuss that overall funding is often limited.

Medicaid expansion and changes in Purchased/Referred Care reimbursement policy have supported increased access to health care and reproductive health care services. In 2015, the Montana legislature passed the bipartisan Health and Economic Livelihood Partnership (HELP) Act, extending Medicaid coverage (Table 1) to adults with incomes up to 138% of the federal poverty level (FPL). As of 2018, an additional 15,495 Native Americans gained Medicaid coverage through the expansion program in Montana. Expanded Medicaid coverage has allowed Native Americans throughout the state to seek a broader range of services from any provider that accepts Medicaid, allowing them more flexibility and choice in their provider and the care they receive. The increase in Medicaid coverage has also provided a significant influx in funding for Indian Health Service units, which can bill for services provided to Medicaid-enrolled Native Americans with a 100% federal matching rate. Importantly, in addition to the services that IHS facilities and tribal health departments can provide directly, they can also refer patients to additional services at non-tribal providers through the Purchased/Referred Care (PRC) Program. As a result, Native Americans, including Crow tribal members, now have greater access to reproductive health care, including fertility treatment, which is not provided within the IHS system. Approximately 35% of patients at Planned Parenthood of Montana in Billings are covered by Medicaid expansion or the state’s family planning waiver program, Plan First.

Provider Distribution

The Crow Agency IHS Service Unit employs one Ob-Gyn and one midwife, who are the only family planning providers in the community. A shortage of providers on the reservation and lack of transportation are barriers to accessing care in a timely manner. Many women seek care at one of the non-IHS clinics off the reservation in nearby Hardin or farther away in Billings.

Provider recruitment and retention is a key challenge both on and off the Crow reservation. Interviewees reported a significant staffing shortage at the Crow Indian Health Service, not only in obstetrics and gynecology, but also in behavioral health and nursing. IHS is in the process of building a housing unit for staff across from the hospital, which they hope will draw more providers to work there. Planned Parenthood in Billings also reported staffing challenges due to competition with other health care providers in the area. Staffing shortages mean the Planned Parenthood clinic must shorten their hours, limiting availability for working women who can often only come in the evening and on the weekends.

Publicly-funded contraceptive services are available on the Crow reservation, but some women experience barriers to obtaining timely services. The Crow-Northern Cheyenne Hospital offers a broad range of services including behavioral health, Ob-Gyn, dental care, and surgery. All three of the IHS locations also provide family planning services, including STI testing and treatment, and on-site insertion of implants and IUDs (at the hospital and Lodge Grass clinic). Sterilization services are not provided, but IHS clinicians said they will refer patients seeking sterilization to providers in Billings. While some providers are able to see patients on the same day the appointment is made, some interviewees noted they double and triple book appointments to account for no-shows. Several focus group participants reported experiencing long waiting room times.

There are several other key health care providers serving the Crow population. In nearby Hardin (13 miles away), the Bighorn Valley Health Center’s (BVHC) client population is roughly two-thirds Native American, 80% of whom are Crow, and the clinic offers the full range of contraceptive methods and STI testing and treatment. In addition, the Billings Urban Indian Health and Wellness Center, approximately 60 miles away in Billings, operates as part of the federal Urban Indian Health Program as a nonprofit, full-service medical clinic. They provide low- and no-cost health services including oral contraceptives, STI testing and treatment, and free transportation to and from the Crow-Northern Cheyenne Hospital and Pryor Health Station. The Yellowstone County Health Department and multiple primary and specialty care providers are also in Billings, in addition to two Planned Parenthood clinics offering the full range of contraceptive options and abortion services. BVHC and Planned Parenthood were the only clinics in the area receiving federal Title X family planning funds. However, at the time of this site visit, interviewees noted that if the Trump administration’s Title X rule changes take effect, Planned Parenthood will have to leave the program. Subsequent follow up calls with Title X providers found that this requirement has been challenging, and on August 19, 2019, Planned Parenthood formally withdrew from the Title X program nationally following implementation of the rule.

Crow women may go to Crow-Northern Cheyenne Hospital for prenatal care, but the hospital does not offer labor and delivery services. Some Crow women travel to non-IHS providers in Billings for all of their pregnancy care. There is one Ob-Gyn physician at Crow-Northern Cheyenne Hospital. However, the hospital is not approved for labor and delivery services, so women living on the reservation are referred to Billings after 30 weeks gestation, which can be more than an hour drive away. In emergency situations, women have delivered at the emergency room of Big Horn County Memorial Hospital in Hardin. Several focus group participants shared stories of women they knew who had experienced pregnancy loss or preterm births because they were not able to detect a problem with the pregnancy early enough. Although the Crow-Northern Cheyenne Hospital did not have an ultrasound technician at the time of the site visit, they have since hired someone for this position. Historically, midwifery was a common practice within the Crow tribe²⁰ , but none of the focus group participants had used a midwife. One interviewee noted that St. Vincent in Billings has an active midwifery clinic and provides prenatal care to many women in the area. IHS is also working to restart their midwifery program at the Crow-Northern Cheyenne Hospital. The hospital employs one female midwife who is available for family planning services and has plans to hire another. Transportation is a significant barrier for women traveling for prenatal or pregnancy-related services. Some focus group participants noted they try to use the Crow Transit bus, but it leaves Crow Agency (the seat of the reservation) once a day at 6:00 am and is reportedly unreliable. In addition, many areas of the reservation are over an hour away from Crow Agency. Medicaid will pay for transportation costs for pregnancy care, but that is of little use if reliable transportation is unavailable. One focus group participant said she has had to hitchhike to and from Billings to get to her health care appointments.

Several statewide and Crow-specific maternal health programs have existed in the past. The state used to administer the Montana Initiative for the Abatement of Infant Mortality (MIAMI) Project to increase access to prenatal, delivery, and postpartum care for high-risk pregnant women and their infants. Additionally, the Crow Healthy Mothers and Healthy Babies program previously provided outreach and education to pregnant women. Recently, the Montana Healthcare Foundation has supported Native American perinatal behavioral health program development efforts statewide, but it is unknown how this will impact the Crow tribe. BVHC provides fully-integrated care for pregnant women including access to substance use treatment with on-site behavioral health providers.

Substance Use Disorder and Pregnancy

Substance use disorder is a serious concern on the Crow reservation, and a recent policy announced by the Big Horn Attorney’s office to “crack down” on pregnant women using drugs or alcohol has made outreach and engagement even more difficult. Interviewees reported high rates of substance use among youth and adults on the reservation. Focus group participants explained that children whose parents have substance use disorders (SUD) are often sent into foster care out of state, and interviewees said that grandmothers often step in to raise young grandchildren in the absence of parents who are dealing with addiction. BVHC has a robust SUD treatment program for pregnant women. The clinic conducts outreach and screening, performs a warm handoff to internal providers for treatment, and offers Medication-Assisted Treatment (MAT) for those with opioid use disorders. Messengers for Health, a health outreach and education program on the Crow reservation, also teaches substance use prevention to youth within the schools. Still, interviewees reported significant stigma around substance use during pregnancy. In January 2018, the Big Horn County Attorney announced he would seek to jail pregnant women found to be using drugs or alcohol. In response to strong backlash, the attorney has backed away from the policy (although has not yet changed it as of October 2019) and has been participating in workgroups about how to provide holistic care to those with SUD. One interviewee noted the attorney’s actions had a noticeable “chilling effect” on women presenting for prenatal, family planning, and postpartum care and made outreach to these women even more challenging than it already was.

Contraceptive Provision, Access, and Use

The full range of contraceptive methods are available at IHS; however, contraception use is reportedly low, particularly among teens, contributing to the Crow tribe having the highest teen pregnancy rate in Montana. Lack of transportation, confidentiality concerns, cultural beliefs, lack of awareness, and historical mistrust of health care providers among the Crow population are barriers to care.

Provider shortages, traditional beliefs, and a lack of health literacy all contribute to the higher rates of teen pregnancy among Crow youth. The overall Montana teen birth rate is 26 births per 1,000. Big Horn County, where Crow reservation is located, is ranked highest in the state for teen births, at 85 births per 1,000. Contraceptive care for low-income women is available at IHS and various providers in Hardin and Billings. However, interviewees explained that babies are viewed as a blessing in many traditional families, even for teens, and given this perspective, family planning is not always prioritized. Low health literacy was also reported as a limitation to contraceptive use.

A legacy of forced sterilization and experimentation, confidentiality concerns, and turnover at the IHS administration has led to a distrust of IHS and other western providers. Several interviewees discussed the lasting impact the history of nonconsensual research and forced sterilization has had on the Crow tribe. Native American women,²¹  including Crow women,^22 ,23  were sterilized without their consent by U.S. government employees as recently as 50-60 years ago.

Confidentiality concerns are also a significant barrier to family planning and STI testing services on the reservation, as is common in many small communities. Several interviewees expressed concern that patients’ relatives and friends working at IHS do not always adhere to robust confidentiality standards. In addition, turnover in the service unit director position at IHS and within the tribal administration also serves as a barrier to social service and health education programs such as Messengers for Health, whose leaders must gain each new administration’s buy-in for their existing programs.

St. Vincent is the only religious health system in Billings, and in practice, it has few restrictions on contraception, although it recently stopped performing tubal ligation. There are two major health systems in the area, St. Vincent and Billings Clinic, both of which provide the full range of contraceptive methods including LARC. However, St. Vincent stopped providing tubal ligation in June 2019, and interviewees reported that St. Vincent providers often refer to Planned Parenthood for long-acting reversible contraception (LARC), such as IUDs and implants, because of their own beliefs or they lack experience due to low volume. Several focus group participants noted they typically do not go to St. Vincent for contraception simply because Billings Clinic, the other major hospital in the area, is closer to the reservation.

Sex Education Policy and Provision

Sex education is mostly discussed informally in the home, with intermittent efforts to provide formal education in schools. Education about STIs and HIV is lacking, and there is significant stigma associated with HIV.

Sex education on the Crow reservation is influenced by strong cultural and gender roles within the Crow tribe. As some interviewees described it, Crow families are closely knit, and the tribe has a tradition of matrilineal kinship. Older women, especially, adhere to strong beliefs in modesty and treat topics about sexuality, family planning and abortion as taboo. Crow girls often look to their grandmothers for education on these issues. This is significant given many grandmothers are raising their grandchildren. However, family planning is not typically prioritized, and focus group participants said many girls and young women do not know where to get contraception. Two focus group participants shared they each had friends who became pregnant at 11 and 14 years old, respectively. Abortion was not considered an option for either, and someone else raised the babies for them. “This is common,” said one focus group participant.

Outside of the family, several school-based sex education programs exist but are not adopted consistently. Messengers for Health was invited into schools on the reservation by Crow women in the community to educate girls from 5^th to 12^th grade about sexual risk factors for cervical cancer using a culturally competent curriculum. Topics reflected cultural values and covered self-respect, peer pressure, substance use, and discussions about what students have heard about sex from their families. Over the years, adoption of this program has varied depending on level of support from the Crow administration. Planned Parenthood in Billings employed a Health Educator who is Native American and has worked with several schools in and around the Crow reservation. In several Crow communities on the reservation, she taught the culturally-tailored “Making Proud Choices” curriculum to high school students. In one town, she was only allowed to work with female students due to Crow cultural norms. However, in another community, both boys and girls participated. Interviewees felt the latter community’s remoteness from Crow Agency and overall lack of services led to greater appreciation and acceptance of the education and outreach. Interviewees added that there appears to be more openness to this type of education as staff gets younger and more aware of these issues, particularly as they relate to substance use.

STI and HIV rates are on the rise, and there is significant stigma associated with HIV. Interviewees report that STI rates have increased dramatically in both Big Horn and Yellowstone counties. The STI incidence rate (including chlamydia, gonorrhea, and syphilis) for Big Horn County, where most of the Crow reservation is located, was 5,484.9 per 100,000 in 2017 compared to 551.6 per 100,000 across the entire state of Montana. Due to confidentiality concerns and lack of awareness, many people do not get tested for STIs or HIV. Stigma, particularly related to HIV, is a growing concern as HIV rates increase due to drug use. Several interviewees said HIV patients travel to Billings for their care to avoid confidentiality concerns at IHS. Another interviewee noted that 20 years ago, tribal public health nurses would go out into the community and provide condoms and testing, but that IHS does not currently do any outreach related to STIs or HIV. Focus group participants said the providers they see in Billings do talk with them about STIs and provide information about prevention and testing services.

Sexual and Domestic Violence

As in many tribal communities, the Crow tribe has a history of sexual abuse and domestic violence dating back to colonization and boarding schools. In 1871, the U.S. Congress declared Native Americans wards of the U.S. government and began a forced assimilation campaign to integrate children into the dominant white culture. Native American children were taken from their families at the age of 4 or 5 and placed in government and Catholic church-run boarding schools where communication with their families was prohibited. Many suffered physical and sexual abuse. In the absence of healing, the effects on the community continue, and is exacerbated by substance use, limited access to employment, and poverty.

Interviewees noted that sexual and domestic violence remain major problems in current times. The Crow Agency has a domestic violence program that supports women who are victims of abuse. Advocates visit women who are referred by the police to connect them with needed services including a safe house, restraining orders, and health care. However, interviewees and focus group participants noted that women may wait a long time for the police to come if they call from the reservation, so these advocates often encourage women to go to Billings. Issues with law enforcement jurisdiction can also complicate problems. The FBI, county sheriff, and tribal police all have overlapping roles on these issues, which can result in re-traumatizing victims and missteps in investigations. One interviewee shared a story of an FBI agent barging in on a victim’s family planning appointment. Another provider pointed to domestic violence’s impact on women’s reproductive choices in instances where abusers prohibit women from using contraception, causing pregnancy and increased dependency on the abuser. Focus group participants also raised the issue of the disappearance of tribal members as a key concern of their community. Native Americans make up less than 7% of the state’s population but accounted for 26% of all missing person reports between 2016 and 2018, and Native women and girls account for 30-40% of human and sex trafficking victims in Montana. The emergency department at the Crow-Northern Cheyenne Hospital has Sexual Assault Nurse Examiner (SANE)-trained nurses, and all of the hospital staff have been trained in trauma-informed care. Interviewees also discussed the importance of the availability of female providers to reduce barriers for victims seeking family planning and reproductive health care.

Access to Abortion Counseling and Services

Crow families typically do not discuss abortion, and many are opposed to it. The nearest abortion services are located in Billings.

Many Crow women and girls do not consider abortion an option, and often relatives will raise the child. Some Crow women used to practice abortion using plants/herbs. In fact, women from other tribes used to come to Crow communities for this purpose. However, these practices are not common today due to general opposition to abortion. The Christian church is very influential on the Crow reservation, and abortion is considered taboo due to both traditional and religious beliefs. Interviewees explained that babies are considered a blessing among traditional Crow families, regardless of the circumstance of the pregnancy. When needed, relatives will step in and raise the child. A few of the focus group participants noted they knew of a friend who had an abortion, but most were reluctant to discuss it or said they did not believe in abortion, and it had never crossed their mind as an option.

Abortion counseling and services are not available on the reservation, but there are two Planned Parenthood locations in Billings that offer abortion services. Montana does not have any of the state-level abortion restrictions that some other states have, such as waiting periods, mandated parental involvement, or limitations on publicly-funded abortions. However, IHS providers are federal employees, and therefore do not provide abortions. Some providers make abortion referrals to Planned Parenthood in Billings. Under court order, Montana’s Medicaid program is one of 15 state Medicaid programs that uses state funds to pay for abortion beyond the circumstances of rape, incest, and life endangerment permitted by the federal Hyde amendment, and Planned Parenthood reported they have had no issues receiving reimbursement.

Even though Big Horn County is considered “blue in a red state,” as one interviewee put it, there is strong anti-abortion sentiment in Big Horn and Yellowstone Counties. As a result, women who are seeking abortions, and providers who want to refer them, do so with discretion. Despite abortion being highly stigmatized in the area, Planned Parenthood staff reported they do see Crow patients seeking abortion services.

Conclusion

Montana offers broad coverage for reproductive health services through the expanded Medicaid program and family planning waiver. Medicaid expansion has significantly improved the financial health of both IHS and non-tribal providers, leading to increased capacity to meet the overall health care needs of the Crow tribal community. Tribal members can access most methods of contraception at IHS service units on the reservation at no cost. However, there are not enough providers to meet the reproductive health care needs of Crow women on the reservation. Confidentiality concerns, historical mistrust of the health care system, and lack of transportation are barriers to care. Many topics related to contraception, abortion, and STIs are not discussed openly, contributing to the highest teen pregnancy rates in the state and high rates of STIs. However, several organizations, including Messengers for Health and Planned Parenthood of Montana have had success with outreach and education in schools, and continue to look for ways to engage youth. Substance use also influences family roles, particularly in cases where grandmothers step in to raise children when parents are absent due to challenges with substance use. Sexual and domestic violence affects many Crow families; interviewees reported that enhancements to both victims support services and law enforcement systems are needed to address these issues.

Acknowledgements

The authors thank all of the interviewees that participated in the structured interviews for their insights, time, and helpful comments. All interviewees who agreed to be identified are listed below. The authors also thank the focus group participants, who were guaranteed anonymity and thus are not identified by name.

Nona Main, former Health Educator, Native Outreach Project, Planned Parenthood of Montana

David Mark, MD, CEO, Bighorn Valley Health Center

Timothy P. McCleary, Ph.D., Department Head, General Studies Department, Little Big Horn College

Alma McCormick, Executive Director, Messengers for Health, Crow Nation

Lucille Other Medicine, MSW, Program Assistant, Messengers for Health, Crow Nation

KFF: Usha Ranji, Michelle Long, and Alina SalganicoffHealth Management Associates: Diana Rodin, Carrie Rosenzweig, and Sharon Silow-Carroll

Introduction

Located in northwestern Pennsylvania on the shore of Lake Erie, Erie County has a large city (Erie), where 80% of the population lives, several smaller communities, and a large swath of rural area. Although the state expanded Medicaid under the Affordable Care Act, the county is federally designated as medically underserved and as a health professional shortage area (Figure 1). However, the city of Erie has a relatively strong health care safety net that includes family planning services, and the local health care system is working to meet the needs of a relatively large population of refugees and immigrants. As a whole, Erie County is more politically conservative than the city of Erie, and the Roman Catholic Diocese of Erie and the large Catholic population in the region influence both the health care and educational systems. The conservative culture plays a role in reproductive health care access in the region, particularly as it affects the availability of abortion services.

This case study examines access to reproductive health services for low-income women in Erie County, Pennsylvania. It is based on semi-structured interviews conducted by staff of KFF and Health Management Associates (HMA) with safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates (“interviewees”), as well as a focus group with low-income women in April 2019. Interviewees were asked about a wide range of topics that shape access to and use of reproductive health care services in their community, including availability of family planning and obstetrical care, provider supply and distribution, scope of sex education, abortion restrictions, and the impact of state and federal health financing and coverage policies locally. An Executive Summary and detailed project methodology are available at https://www.kff.org/womens-health-policy/report/beyond-the-numbers-access-to-reproductive-health-care-for-low-income-women-in-five-communities.

Contraceptive Provision, Access, and Use

Family planning providers offer a wide range of contraceptive choices including long-acting reversible contraceptives (LARCs), but barriers persist for some patients and for same-day access among some providers.

Erie County’s Title X clinic is the only provider offering same-day access to long-acting reversible contraceptives (LARCs), including IUDs and implants. Adagio Health, the most comprehensive provider of family planning services in the county, has a clinic in the city of Erie and one in nearby Edinboro. These clinics are supported by funds from the federal Title X program and are reportedly the only providers offering same-day access to most contraceptive methods including LARCs. Interviewees noted that the need for multiple appointments at other providers can be a barrier to LARC access. A clinician commented that more immigrant and refugee patients were requesting LARCs recently because they feared access to services would soon be restricted under federal policy changes related to immigrants. Federally Qualified Health Centers (FQHCs) in the region offer far fewer contraceptive methods, typically the pill. Interviewees perceived primary care providers as similarly limited in their provision of family planning services, particularly in that they do not provide LARC. One interviewee noted that referral loops between the large Ob-Gyn group and FQHCs are not always closed, leaving clinicians uncertain whether their patient made their appointment or received services. However, these entities are working to improve their coordination.

Challenges getting patient-centered, respectful care are widespread. While many focus group participants had been able to access family planning services they needed, many also had negative experiences with reproductive services over the course of their lives. Focus group participants described: pressure from providers to use or not use contraception based on the providers’ own preferences and attitudes about ideal family size, the age of the patient, or the provider’s own religious beliefs; traumatic birth experiences or obstetric care; and racial and socioeconomic discrimination in the health care system. Interviewees and focus group participants reported that women who are uninsured or covered by Medicaid are not always treated with respect by private providers and have limited alternatives to switch providers if they have a negative experience.

Sex Education Policy and Provision

Interviewees described variation among school districts in their willingness to provide sex education and their use of evidence-based programs. The student parenting program associated with Erie City School District recently implemented the evidence-based, comprehensive FLASH curriculum.²⁴  At the same time, there is a significant presence of crisis pregnancy centers (CPCs) in schools from elementary through high school that provide more limited “character education.” A stakeholder reported that the CPCs, which usually promote abstinence, receive state, federal, and private funding which enables them to conduct more outreach and programs than the more comprehensive reproductive health care providers. Focus group participants perceived availability of sex education as inconsistent across schools and not necessarily adequate for high school-aged students.

Religious and Cultural Factors

Erie County, including the city, has a large Roman Catholic population, and the church’s policies on family planning and abortion have influenced the health care and educational systems. The Catholic Diocese of Erie includes 12 northwestern Pennsylvania counties in addition to Erie, and claims 202,000 members, almost half of whom are in Erie County. Although Erie County’s formerly-Catholic hospital, St. Vincent, no longer has a religious affiliation,²⁵  some interviewees and focus group participants were unsure whether all faith-based restrictions on care, such as limits on sterilization, have been eliminated. More broadly, Catholic and Evangelical Christian opposition to abortion is reflected in the community, with focus group participants stating that people are “closed off” and reticent to discuss abortion, and to some degree, contraception and other reproductive health issues.

Members of the extremely diverse refugee and immigrant communities in Erie have a wide variety of religious affiliations and beliefs, with varied preferences related to reproductive health care. The health center that provides culturally competent care predominantly to refugees provides referrals to the full range of reproductive health care, including family planning and abortion services. Staff noted that it was rare for patients to seek abortion services, but they had provided referrals when asked.

Specialized Services for Erie’s Refugee Communities

The local health care system is focused on meeting the health and family planning needs of a significant refugee population.

Erie is home to one of the largest refugee resettlement populations in Pennsylvania, and refugee resettlement agencies as well as a refugee-focused health center, the Multi-Cultural Health Evaluation Delivery System (MHEDS), are focused on meeting their health needs including family planning services. According to one interviewee, from 2012 through 2016, Erie settled almost 3,500 refugees from countries including Bhutan, Nepal, the Democratic Republic of Congo, Russia, Somalia, South Sudan, Syria, and Ukraine. Some interviewees mentioned that there has been a significant reduction in the number of refugees seeking services in Erie, which they attribute to the current national political climate. The State Department’s Refugee Processing Center reports that refugee arrivals to Erie has plummeted since 2016.²⁶  Women who are part of those communities have varying preferences and use of family planning services, and the local health care system is building capacity to better meet their needs. MHEDS is an FQHC “look-alike” health center and the sole provider in Erie for the refugee resettlement program, with which it contracts to complete health screenings for newly arrived refugees. MHEDS, along with the Title X program, also provides services to migrant agricultural workers and Amish and Mennonite communities in Erie County.

MHEDS has tailored its services and staffing to address the particular concerns of Erie’s refugee communities and to provide culturally competent care. The health center has medical interpreters from many refugee communities in Erie to address language and cultural barriers. Some women have experienced genital mutilation, and MHEDS is focused on improving provider capacity in Erie to address the associated physical and mental health consequences and competently care for these women. They plan to add well women visits to further develop their onsite women’s health services. Refugees also have varied views of the highly medicalized American model of prenatal care. Some women are not accustomed to the frequent prenatal appointments or standard testing, which can lead to tension with providers. Refugees have Medicaid coverage and are assigned case managers for their first five years in the United States, which helps support access to health care services. However, outside MHEDS, women who need services in languages other than English often face barriers, particularly when providers do not follow requirements to offer interpretation services.

Cost and Coverage

Access to contraceptives is shaped by state policies that have expanded Medicaid and promoted availability of all family planning methods, but on the local level, providers are concentrated in the population centers, limiting access for women in the rural parts of the county. Cost is a barrier to contraception for some uninsured women, even at publicly-funded health centers or Title X clinics using sliding fee scales.

Medicaid expansion has supported increased access to health care broadly and to family planning services in recent years. Pennsylvania’s Democratic governor presided over Medicaid expansion in 2015.²⁷  Between 2010 and 2017, Pennsylvania’s uninsured rate decreased from 10.2% to 5.5%. As of early 2019, nearly 700,000 Pennsylvanians were enrolled in the Medicaid expansion. Pennsylvania also has a family planning program established through a Medicaid State Plan Amendment that covers comprehensive family planning services for eligible men and women with incomes up to 220% FPL (Table 1).

Erie County’s Title X grantee, Adagio Health, is the key provider of comprehensive family planning services to low-income women, though access to all health care services is limited in rural areas. While Medicaid expansion has increased the number of providers in Pennsylvania, interviewees reported that it remains difficult to recruit and retain clinicians and staff in Erie County, resulting in provider shortages. As a result of competing demands on patients’ time, many providers struggle with high no-show rates which lead to scheduling difficulties. Transportation is a barrier to all health care services. Unreliable buses and lack of access to cars limit low-income women’s ability to travel, particularly in rural areas, but also within the city of Erie where severe winter weather can compound travel challenges.

According to an interviewee, between 10% and 20% of patients served by Adagio Health are uninsured. Because Title X patients pay for care based on a sliding scale, some can face fees up to 50% of the cost of the family planning method, which can be as much as $250 for an IUD. Emergency contraception is available at pharmacies or from a doctor, but focus group participants found it expensive to buy over the counter and hard to get a prescription; one participant described a provider refusing to dispense emergency contraception because of their own religious beliefs.

Provider Distribution and Ob-Gyn Consolidation

Rural areas of Erie County have less access to health care. The Title X grantee is the primary family planning provider for low-income women, while one Ob-Gyn practice dominates the perinatal care landscape.

Maternity Care

Provider consolidation has resulted in fewer options for maternity care in the county. There are no longer any maternity facilities outside of the city of Erie, so most deliveries take place at one of the three major hospitals in the city. Nearly all perinatal care is provided by a single physician group, with two locations in the city of Erie and two satellite offices in Corry and Union City, smaller towns in Erie County. Interviewees highlighted that there is little competition or alternative to this large provider group. The Title X grantee, Adagio Health, also provides prenatal care to some low-risk women, working with physicians in the large Ob-Gyn practice who track their charts weekly and provide delivery and postpartum services. Many interviewees and focus group participants raised concerns that having only one major Ob-Gyn practice could result in lower quality of care and noted they had heard or directly experienced that some of the practice’s providers do not treat patients with Medicaid coverage with respect. Focus group participants also expressed preferences for greater continuity of care than offered by this practice where patients may see a different prenatal provider during each visit and at delivery. Several focus group participants had used midwifery or doula services, but this was not reported to be the dominant model.

Provider practices around postpartum care and related family planning services vary and often lack continuity. Some providers discuss postpartum resources including family planning during prenatal visits, while others do so after delivery. One interviewee noted that some women do not know where to go for postpartum services; and some return to their prior source of care, only to be directed back to the Ob-Gyn for their postpartum follow-up visits. Most providers refer low-income women to the Title X provider for family planning after their pregnancy Medicaid ends; however, women seeking sterilization are referred to the hospitals in the city of Erie.

Other Reproductive Health and Social Service Providers

The Erie County Department of Health (DOH) operates a sexually transmitted infection (STI) clinic providing testing and treatment, infectious disease surveillance, education, and robust HIV follow-up care. The STI clinic provides free testing and treatment two days per week or by appointment, with a particular focus on pregnant women and their partners. DOH recently identified an increase in syphilis among infants in Erie, reinforcing the need to screen all pregnant women. DOH collaborates with partners including the Title X grantee, which also provides free HIV testing and treatment services. The department also conducts rapid HIV screening, counseling, pre-exposure prophylaxis (PrEP), and ongoing follow-up with each person who tests positive for HIV to ensure that they are connected with and maintain access to treatment, including home visits if needed. Multiple interviewees and focus group participants stated that there is a lack of knowledge about STIs among youth in the community. Stigma continues to be a barrier to STI testing and treatment, but DOH conducts community-based education programs as funding allows.

The Erie County Women Infants and Children (WIC) program and the Nurse Family Partnership provide social and medical services and referrals for family planning. The WIC program is well-established, long-standing, co-located with community centers in the city of Erie, and serves a “unique and diverse” caseload of about 7,500 people annually with a wide variety of community-based programs for parents and infants. Two of its centers are located close to Erie’s largest public housing facilities. Enrollment in WIC services has been declining due to fears among the large immigrant population about use of public programs creating risks to immigration status (“public charge”). The Nurse Family Partnership program, based at the DOH, provides evidence-based nurse home visiting services free of charge to low-income women who are pregnant with or parenting their first child, up to the age of two. The program serves an average of 95 women per year, with the goals of improving pregnancy outcomes, child health and development, and economic self-sufficiency.

Access to mental health care is very limited in Erie County. There is a lack of access to treatment for postpartum depression and to mental health services more broadly. Focus group participants highlighted stigma, concerns about child welfare involvement, and a shortage of mental health services in the city and county as the key barriers.

Access to Abortion Counseling and Services

The lack of abortion providers in Erie County and the anti-abortion climate make it difficult to access abortion counseling and services.

There are no clinics providing abortion services in Erie County, and residents seeking abortion care must travel at least 100 miles away to Pittsburgh, New York, or Ohio. Travel time, transportation, and the cost of the procedure are barriers to abortion access for Erie County residents. Compounding the challenges for low-income women, Pennsylvania Medicaid does not cover most abortions, and the 24-hour waiting period in Pennsylvania (and Ohio) results in women having to make two trips. Furthermore, earlier in 2019, Ohio passed a bill that could prohibit any abortions in the state as early as six weeks of gestation. While the law is currently blocked under judicial order, if implemented, it would further diminish options for abortion services for women in western Pennsylvania. One focus group participant recounted an experience in which she and her husband could not save enough money for the transportation to the clinic, which ultimately prevented her from having the procedure she sought. Several interviewees and focus group participants mentioned that there used to be a local abortion provider, but the clinic closed several years ago. Many interviewees were unfamiliar with the state’s policies and restrictions on abortion, and some focus group participants and more than one interviewee believed, incorrectly, that abortion is not legal in the area.

Many providers said they provide women with information on where to obtain an abortion if they ask. It is often hard for women to get information about abortion, or to know which providers can make a referral to services. Some providers discussed looking up information for women who needed abortion counseling or services, and some said they would refer to the Title X program, which could provide abortion referrals. At the time of the interviews, most providers did not view the new Title X regulation that prohibits grantees from making referrals for abortion as having a significant impact in the area because they felt that the number of referrals is already low. (These interviews took place before the new rule took effect.) Subsequent follow up conversations with Title X providers have found that this requirement has in fact been challenging as they have not been able to offer referrals, and this has eroded trust between the providers and the women who seek abortion care.

Crisis pregnancy centers (CPCs) have a large presence in the community, and many providers refer to CPCs without knowing what services they do and do not offer. CPCs typically offer limited medical services and all discourage women from seeking abortion services. In Erie County, the largest CPC offers pregnancy tests, STI screening, ultrasounds, referrals to prenatal care, adoption counseling, smoking cessation services, and classes on topics such as breastfeeding and childbirth, all at no cost to clients as they receive state and federal funding. Some interviewees suggested that the CPCs provide biased information, and that many providers refer women to the largest CPC in Erie without understanding its limited scope or anti-abortion mission. The major CPC in Erie County reported that they counsel women on all their options; however, this appears to be at odds with its mission, the priorities of its funders, and the typical policies of CPCs. A focus group participant reported feeling pressured by CPC staff to adhere to its faith-based principles, which include opposition to abortion. Focus group participants were aware of the CPCs in the area and knew these organizations provide adoption counseling and pregnancy tests (a few had gone for pregnancy tests in the past) and do not offer abortion services.

Conclusion

Family planning services are generally available in the city of Erie, but access is more limited in the rural parts of the county and for uninsured women. Medicaid expansion, a Medicaid-funded state family planning program, and targeted programs to serve the refugee communities in Erie County facilitate access to contraception for most low-income people. However, lack of integration between primary care and reproductive health services, gaps in referral follow-up, heavy reliance on the area’s sole Title X provider, and language barriers are ongoing challenges to the provision of comprehensive reproductive health services. Further, with no abortion providers in Erie County, a conservative political and cultural environment, and no abortion coverage through Medicaid, low-income women seeking abortion services face cost and transportation barriers as well as stigma.

Acknowledgements

The authors thank all of the interviewees that participated in the structured interviews for their insights, time, and helpful comments. All interviewees who agreed to be identified are listed below. The authors also thank the focus group participants, who were guaranteed anonymity and thus are not identified by name.

Laura Beckes, CHES, HIV Disease Intervention Specialist, Erie County Department of Health

Amanda Cox, Medical Advocate, Safe Journey

Kathy Dahlkemper, Erie County Executive

Heather Goodwin, Medical Assistant, Primary Health Network

Dylanna Grasinger, Director, USCRI-International Institute

Toni Gromacki, Medical Coordinator, Community Health Net

Debora Jamison, Director, Erie County WIC

Chris Kain, Nurse Practitioner, Community Health Net

Juliette Mannino, Nurse Practitioner, Independent Consultant

Wendy Neilsen, RN, Nurse Family Partnership/Immunization Supervisor, Erie County Department of Health

Myrna Otero, Practice Manager, Primary Health Network

Susan Scriven, Nurse Practitioner, Adagio Health

Patricia Stubber, CEO, Multi-Cultural Health Evaluation Delivery System (MHEDS) (and team)

Lisa Szymanski, BSN, RN, Public Health Nurse, HIV/AIDS Surveillance and Partner Services, Erie County Department of Health

This project was designed and carried out by staff of KFF and HMA. Major components of the project were the selection of sites, review of documents about state and local policies, structured interviews with providers and organizations in each community, focus groups with women in each community, analysis, and preparation of reports.

Overall design: Site visits by 4-person teams from KFF and HMA including in-depth, semi-structured interviews with local clinicians and representatives from health and social sector organizations caring for low-income, reproductive age women, and focus groups in five communities: Dallas County (Selma), Alabama; Tulare County, California; St. Louis, Missouri; Crow Tribal Reservation, Montana; and Erie County, Pennsylvania.

Site selection criteria: Based on variation in state Medicaid expansion, presence of state-funded family planning program, state laws governing abortion, geographic region in US, racial/ethnic makeup, presence of religiously-affiliated providers and CPCs (Table 1).

Document and policy reviews: Included but not limited to Medicaid eligibility and covered services, state family planning programs and restrictions on use of public funds, sex education, abortion, community health needs assessments, and provider shortage areas.

Structured interviews: The research team, comprised of staff from KFF and HMA, conducted interviews in-person or by phone with key reproductive health safety net clinicians and clinic directors, social service and community-based organizations, researchers, and health care advocates. Qualitative interview guides (master guide available upon request) were developed and included questions and probes regarding policies, access, facilitators and barriers related to contraception/family planning, sex education, STIs, obstetrical care, and abortion services. The interviews were tailored to individual regions and interviewee roles. After obtaining verbal consent, interviews were recorded and typically lasted 60-75 minutes. Interviewees who are quoted by name in this report gave approval for their attribution. Notably, not all individuals who were contacted agreed to be interviewed, and the research team was not able to speak to all providers in the community. Interview responses are self-reported, based largely on perception and experience not verifiable by investigators.

Focus groups: A focus group in each region was conducted with low-income women ages 18-40, with race and language reflecting the community/regions. The number of women in the groups ranged from 9 to 12. Recruitment and facilitation was provided by Perry Undem Research/Communication using a KFF staff-developed moderator guide with questions about their access to and use of family planning, obstetrical, and abortion services. The groups were comprised of a mix of women who were uninsured, on Medicaid, and covered by private insurance. All of the groups were conducted in English, except for Tulare County, which was conducted in Spanish. While the focus groups were audio recorded for preparation of this report, all participants were guaranteed anonymity. Thus, none of the participants are identified in this report. Each woman was paid $200 for her time and participation.

Analysis: Included but not limited to reviews of relevant policies, statistics and background information; qualitative review of interview notes and recordings; development of comparative grid summarizing, comparing and contrasting interviewee responses; focus group transcripts and moderator outlines of key themes; development of individual site case study reports.

1. Wisconsin covers adults up to 100% FPL in Medicaid but did not adopt the ACA Medicaid expansion. ↩︎
2. Missouri’s Women’s Health Services Program covers family planning services and approved methods of contraception to uninsured women ages 18-55 with income up to 201% FPL. The program does not permit payments to family planning providers if they also provide abortion services. ↩︎
3. Abstinence Plus models typically stress abstinence, but also include information on contraception and condoms. ↩︎
4. FLASH is a widely used, comprehensive sexuality education curriculum developed by Public Health Seattle–King County and intended to prevent teen pregnancy, sexually transmitted infections and sexual violence. More information is available at https://www.etr.org/flash/. ↩︎
5. In 2019, the state legislatures in Alabama and Missouri passed laws that would have effectively banned abortion services in those states. Federal court rulings have temporarily blocked the enactment of those laws; the states are appealing those rulings. ↩︎
6. 2013-2017 American Community Survey 5-Year Estimates. ↩︎
7. Established through a waiver agreement between Alabama and the federal government. ↩︎
8. 2013-2017 American Community Survey 5-Year Estimates. ↩︎
9. Healthy Horizons magazine, 2018. ↩︎
10. This reflects the highest eligibility limit for pregnant women in the state under the CHIP program’s “unborn child” option. California Medicaid’s pregnancy eligibility limit is 213% FPL. ↩︎
11. HIV/AIDS cases reported by year, preliminary 2018 data, Tulare County, HHSA Public Health. ↩︎
12. St. Louis County, which encompasses all the suburban municipalities, is separate from the adjacent but independent St. Louis City. ↩︎
13. This reflects the highest eligibility limit for pregnant women in the state under the CHIP program’s “unborn child” option. Missouri Medicaid’s pregnancy eligibility limit is 201% FPL. ↩︎
14. As of November 2019, this ruling has not had an immediate effect and the state is expected to appeal. ↩︎
15. On June 20, 2019, a panel of federal appeals court judges ruled that parts of the Title X rule, such as the ban on abortion referrals, would go into effect immediately, with physical separation requirements going into effect in March 2020. ↩︎
16. The largest hospital in the city provides abortions in cases of health complications and fetal anomalies. ↩︎
17. PPSLR and the state of Missouri are involved in a legal battle over their licensure. The case was heard by an Administrative Hearing Commission in October 2019. If the panel sides with the state, Missouri could become the first state without an abortion clinic. ↩︎
18. Section 330 of the Public Health Service Act defines federal grant funding opportunities for organizations, such as community health centers, to provide care to underserved populations. ↩︎
19. Montana’s Medicaid expansion program, HELP, covers adults with incomes up to 138% FPL, and the Plan First family planning Medicaid waiver covers women ages 18-44 with incomes up to 216% FPL. Also, pregnant women with incomes up to 162% FPL are eligible for Medicaid, with coverage extending 60 days postpartum. ↩︎
20. For more information about the history of midwifery among Native American women, see Theobald, B. Reproduction on the Reservation. ↩︎
21. Lawrence, J. (2000). The Indian Health Service and the Sterilization of Native American Women. American Indian Quarterly 24(3). Retrieved from http://bixby.ucla.edu/journal_club/Lawrence_s2.pdf. ↩︎
22. Jaimes, M. A. (1992). The State of Native America: Genocide, Colonization, and Resistance. Boston, MA: South End Press. ↩︎
23. Theobald, B. (2019). Reproduction on the Reservation. Pregnancy, Childbirth, and Colonialism in the Long Twentieth Century. Chapel Hill, NC: The University of North Carolina Press. ↩︎
24. FLASH is a comprehensive sexuality education curriculum developed by Public Health Seattle–King County and intended to prevent teen pregnancy, sexually transmitted infections and sexual violence. It is widely used and includes curricula for elementary, middle, and high school and special education classrooms. More information is available at https://www.etr.org/flash/. ↩︎
25. Saint Vincent Hospital merged with Allegheny Health Network, operated by the insurer Highmark. ↩︎
26. Kaiser Family Foundation analysis of Department of State Worldwide Refugee Admissions Processing System, 2012-2018. Accessed October 2019. ↩︎
27. After Pennsylvania’s Medicaid expansion, adults at or below 138% of the federal poverty level are eligible for Medicaid. Pregnant women are eligible for Medicaid up to 220% FPL. ↩︎

Drug prices are at the center of health policy debates at both the state and federal levels. Medicaid provides health coverage for millions of Americans, including many with substantial health needs. Prescription drug coverage is a key component of Medicaid for many beneficiaries who rely on medications for both acute problems and for managing ongoing chronic or disabling conditions. Without Medicaid, many prescription drugs would be prohibitively expensive to low-income beneficiaries. Both state and federal policymakers are undertaking efforts to control prescription drug costs, and there is renewed policy interest in the Medicaid Prescription Drug Rebate Program (MDRP) as part of these efforts. Policymakers are also currently debating significant changes to payment for prescription drugs through Medicare and commercial insurers that may also have implications for Medicaid and the MDRP as well. This brief explains the MDRP to help policymakers and others understand how Medicaid pays for drugs and any potential consequences of policy changes for the program by answering the following questions:

• What is the MDRP and how does it work?
• What is the impact of the MDRP?
• What is the role of managed care plans and pharmacy benefit managers in Medicaid rebates?
• How does the 340B program interact with the MDRP?
• What are policy proposals related to the MDRP?

What is the Medicaid drug rebate program and how does it work?

In response to rising drug prices and projected increased Medicaid spending, the Medicaid Prescription Drug Rebate Program (MDRP) was created in 1990 by the Omnibus Reconciliation Act.^1 ,2  Under the program, a manufacturer who wants its drug covered under Medicaid must enter into a rebate agreement with the Secretary of Health and Human Services stating that it will rebate a specified portion of the Medicaid payment for the drug to the states, who in turn share the rebates with the federal government. Manufacturers must also enter into agreements with other federal programs that serve vulnerable populations. In exchange, Medicaid programs cover nearly all of the manufacturer’s FDA-approved drugs, and the drugs are eligible for federal matching funds.  Though the pharmacy benefit is a state option, all states cover it, but, within federal guidelines about pricing and rebates, administer pharmacy benefits in somewhat different ways.

The MDRP affects state and federal Medicaid payment for prescription drugs, while Medicaid beneficiaries’ out of pocket cost for drugs is limited to nominal amounts set in statute. Due to Medicaid’s role in financing coverage for high-need populations with low incomes, it is designed to provide access to prescription drugs with little cost to enrollees. Federal rules limit beneficiary cost-sharing to nominal amounts: up to $4 for preferred drugs and $8 for non-preferred drugs, for individuals with incomes at or below 150% of the federal poverty level (FPL) and slightly higher for those with higher incomes.³  Not all states impose cost-sharing for prescription drugs,⁴  and some beneficiary groups are exempt from cost-sharing requirements.

The Affordable Care Act (ACA) made significant changes to the prescription drug rebate program. The law increased the rebate amount for both brand drugs and generic drugs. It also extended rebates to outpatient drugs purchased for beneficiaries covered by Medicaid managed care organizations (MCOs).⁵   Previously only drugs purchased through Medicaid fee-for-service were eligible for rebates even though most states contract with MCOs to provide services to Medicaid beneficiaries.⁶ 

The Medicaid rebate amount is set in statute and ensures that the program gets the lowest price (with some exceptions).⁷  The formula for rebates varies by type of drug: brand⁸  or generic. The rebate formula is the same regardless of whether states pay for drugs on a fee-for-service basis or through payments to managed care plans. The specific rebate on a given drug is considered proprietary. For brand name drugs, the rebate is 23.1% of Average Manufacturer Price (AMP) or the difference between AMP and “best price,” whichever is greater. Certain pediatric and clotting drugs have a lower rebate amount of 17.1% (Figure 1). Best price is defined as the lowest available price to any wholesaler, retailer, or provider, excluding certain government programs, such as the health program for veterans.⁹  AMP is defined as the average price paid to drug manufacturers by wholesalers and retail pharmacies.^10 ,11  For generic drugs, the rebate amount is 13% of AMP, and there is no best price provision.

The rebate calculation also includes an additional inflationary component to account for rising drug prices over time. This rebate is calculated as the difference between the drug’s current quarter AMP and its baseline AMP adjusted to the current period by the Consumer Price Index for All Urban Consumers (CPI-U).¹²  In other words, if a drug’s price increases faster than inflation, the manufacturer has to rebate the difference to Medicaid. The inflationary component is an increasing share of brand drug rebates, accounting for more than half of the total brand drug rebate amounts in 2012.¹³   Because of the inflationary component, the calculated rebate on a drug whose price increases quickly over time could be greater than the AMP for that drug. However, the total rebate amount currently is capped at 100% of AMP.¹⁴ 

In addition to federal statutory rebates, most states negotiate with manufacturers for supplemental rebates. As of June 2019, 47 states and DC had supplemental rebate agreements in place.¹⁵  These supplemental rebates are not subject to the best price floor. States often use placement on a preferred drug list (PDL) as leverage to negotiate supplemental rebates with manufacturers. States encourage providers to prescribe drugs on the PDL over other drugs and create incentives for them to do so if possible. For example, a state may require a prior authorization for a drug not on a preferred drug list. Often, drugs on PDLs are cheaper or include drugs for which a manufacturer has provided supplemental rebates. A few states have used their supplemental rebate authority to negotiate alternative payment models with manufacturers. States have also formed multi-state purchasing pools when negotiating supplemental Medicaid rebates to increase their negotiating power. More than half of states participate in a multi-state supplemental rebate pool.¹⁶  In addition, Medicaid managed care plans may negotiate their own supplemental rebate agreements with manufacturers.

Both states and the federal government play a role in administering the MDRP. Manufacturers must report AMP for all covered outpatient drugs to HHS and report their best price for brand name drugs. HHS uses this price data to calculate the unit rebate amount (URA) based on the rebate formula and inflationary component and provides the URA to states.¹⁷  States multiply the units of each drug purchased by the URA and invoice the manufacturer for that amount. Manufacturers then pay states the statutory rebate amount as well as any negotiated supplemental rebates.

Prescription drug rebates are shared between the federal and state governments. States and the federal government share in the statutory rebate amount based on the federal medical assistance percentages (FMAP), which is the share of Medicaid spending in each state paid for by the federal government. Manufacturers submit rebates directly to states.¹⁸  The ACA increased rebate amounts from 15.1% to 23.1% for brand drugs and from 11% to 13% for generics, but the state share is only calculated off the pre-ACA rebate amount, which means the federal government now gets a bigger share of the rebates.¹⁹ 

What is the role of managed care plans and pharmacy benefit managers in Medicaid rebates?

As more states have enrolled additional Medicaid populations into managed care arrangements over time, managed care organizations (MCOs) have played an increasingly significant role in administering the Medicaid pharmacy benefit. More than two-thirds of Medicaid beneficiaries received their coverage through MCOs in 2017.²⁰  States pay MCOs a monthly fee (capitation rate) to cover the cost of services provided to enrollees and any administrative expenses. States may include all Medicaid services in these contracts or they may “carve-out” certain services, like prescription drugs, from capitation rates. Managed care plans whose contracts include coverage for prescription drugs are allowed to negotiate their own rebates with manufacturers. As with supplemental rebates negotiated by states, additional rebates for managed care plans can be used to determine placement on the PDL.

The ACA extended federal statutory rebates to prescription drugs provided under Medicaid managed care arrangements, and most states now “carve in” prescription drugs. Prior to the ACA, manufacturers only had to pay rebates for outpatient drugs purchased on a fee-for-service basis, not those purchased through managed care. This encouraged states to “carve out” prescription drugs so they would be able to get rebates. Extending rebates to drugs purchased through managed care has resulted in more states carving drug coverage back into managed care. Of the 40 states contracting with comprehensive risk-based MCOs in 2018, 35 states reported that the pharmacy benefit was carved in, with some states reporting exceptions such as high-cost or specialty drugs.²¹ 

Many states also use pharmacy benefit managers (PBMs) in their Medicaid prescription drug programs. PBMs perform financial and clinical services for the program, administering rebates, monitoring utilization, and overseeing preferred drug lists.²²  PBMs may be used regardless of whether the state administers the benefit through managed care or on a fee-for-service basis. Some states are reassessing their use of PBMs in managed care due to issues with the lack of transparency around PBM payments and the prevalence of “spread pricing.” Spread pricing refers to the difference between the payment the PBM receives from the MCO and the reimbursement amount it pays to the pharmacy.²³  In the past, PBMs have been able to keep this “spread” as profit, but a number of states are implementing policies to curb or altogether prohibit this practice.²⁴ 

How does the 340B program interact with the MDRP?

The Medicaid rebate program interacts with other programs that receive manufacturer discounts on drugs. As a condition of participation in the Medicaid Drug Rebate program, manufacturers must also participate in the federal 340B program. The 340B program offers discounted drugs to certain safety net providers that serve vulnerable or underserved populations, including Medicaid beneficiaries.²⁵  340B ceiling prices are calculated to match Medicaid prices net of the rebate, but manufacturers can provide additional discounts to 340B providers that are not subject to the best price rule.²⁶ 

Because the 340B program is administered separately, as stipulated by federal law, states and safety net providers must ensure that manufacturers do not pay duplicative discounts for Medicaid beneficiaries.²⁷  Safety net providers eligible for 340B discounts can choose whether or not they provide drugs purchased with the program discounts to Medicaid beneficiaries within state guidelines.^28 ,29  States may require providers to make the same decision for FFS and managed care enrollees to streamline the process of determining which claims are eligible for rebates. To avoid charging manufacturers a duplicate discount, state Medicaid programs reference a list of safety net providers that provided drugs under 340B to Medicaid beneficiaries, and the Medicaid program will exclude their drug claims from their invoices to manufacturers.³⁰  The file does not include drugs paid for by managed care plans or those dispensed at contract pharmacies, but MCOs also are required to exclude 340B claims from reports they provide to states for rebate purposes.^31 ,32  There are concerns the list can be out of date or inaccurate, so some states maintain their own lists or use claims data to avoid duplicate discounts. Although Medicaid best price and 340B ceiling prices are closely related, the rules states set for how they reimburse pharmacies may have implications for drug costs.^33 ,34 

What is the impact of the MDRP?

The rebate program offsets Medicaid costs and reduces federal and state spending on drugs. In 2017, Medicaid spent $64 billion on drugs and received nearly $35 billion in rebates. Net spending on outpatient drugs comprises 5% of total Medicaid benefits spending. While gross prescription drug spending has increased substantially over time (from $43 billion in 2014 to $64 billion in 2017) rebates have held net spending growth to a much lower rate (Figure 2). Gross spending on drugs increased 48% from 2014-2017, while net spending only increased 25% over the same time period. Net spending actually declined from 2016-2017.³⁵  In comparison to other programs, like Medicare Part D, rebates in Medicaid are a much larger share of drug spending. Medicare actuaries predicted Medicare Part D rebates to reach 23% of drug spending in 2017 and 25% in 2018.³⁶  In contrast, Medicaid rebates accounted for 55% of drug spending in 2017.

The structure of the rebate program essentially creates an open formulary. When a manufacturer enters into a rebate agreement with HHS, Medicaid agrees to cover nearly all FDA-approved drugs from that manufacturer. This approach is different from private insurers who can enter into negotiations with manufacturers about whether or not drugs will be on their formularies, leveraging rebates for drugs that are included or covered with lower patient cost-sharing. While the Medicaid rebate structure enables beneficiaries to access a wide range of drugs, it also places some limits on states’ ability to negotiate with manufacturers. This challenge is particularly acute for new, blockbuster drugs that Medicaid programs must cover with little leverage to negotiate lower costs.

Medicaid prices and the rebate program may have implications for prices paid by other payers. There has been increased attention by policymakers and the public to high list prices, with some brand name drugs launching with price tags of hundreds of thousands of dollars or more. Amidst the discussion of high launch prices, analyses of potential solutions have highlighted the role of the MDRP in the larger drug pricing system. Some have suggested that the “best price” provision and the rebate requirements inflate launch prices to account for the rebate and reduce rebates for other payers (like private insurers) to avoid triggering the best price provision. Medicare Part D rebates are not included in the best price calculation. An analysis from CBO was conducted in 1996, shortly after the creation of the Rebate Program, and showed some initial price increases but found increases due to MDRP ceased within a few years.³⁷  In analyzing the potential impact of the ACA rebate provisions, which increased the rebate amount, CBO estimated a small impact on launch prices.³⁸ 

What are policy debates and proposals about the MDRP?

There is renewed policy interest in the MDRP as states and the federal government explore policies related to drug costs. Proposals at both the state and federal level would make changes directly to the MDRP, and proposed changes to other programs may have implications for Medicaid as well.

Increasing the Effective Rebate Amount in the MDRP

Because the MDRP is a complex program that has evolved over time, it contains some technical issues and provisions that lower the rebate amount paid for some drugs. Policymakers are considering several changes to address these issues and increase the effective rebate amount. While these changes would produce savings for both the federal and state government, authority for undertaking them rests at the federal level, since the MDRP is in federal statute.

One proposed approach is to lift the cap on rebates, which is currently 100% of AMP. Because of rising prices over time, a number of drugs have reached the rebate cap. Increasing or eliminating the cap would generate savings for the program and lower revenues for drug manufacturers.³⁹  The Medicaid and CHIP Payment and Advisory Commission (MACPAC) recommended eliminating the cap entirely.⁴⁰  A bipartisan bill addressing drug costs passed out of the Senate Finance Committee includes a provision to increase the cap to 125% of AMP.

Another policy proposal to increase the Medicaid rebate amount is to change the rebate calculation. Some manufacturers have reduced their rebate obligations by blending the price of an authorized generic with a brand name drug, which reduces the AMP of the brand drug. This occurs when a brand drug manufacturer also produces the authorized generic and the price of both drugs is included in the brand drug’s AMP.  Because the rebate calculation is based on AMP, an artificially low AMP reduces the rebate a manufacturer pays. Legislation enacted in Fall 2019 prohibits manufacturers from engaging in this practice.^41 ,42  Preventing this practice is projected to save about $3.1 billion over the next decade.^43 ,44 

A third set of technical changes to MDRP relates to data and reporting. The rebate calculation relies on price data and product information submitted by manufacturers to CMS. Misclassified drugs or inaccurate price information in these files affects the rebate calculation. A number of policy proposals would strengthen price enforcement mechanisms at the federal level to improve the accuracy of information and ensure appropriate rebates are paid and allow for penalties for reporting inaccurate information. Proposals include providing the Secretary of HHS with the authority to reclassify drugs that are incorrectly classified, increasing oversight of rebates by requiring CMS to conduct regular audits of drug manufacturers’ pricing information, providing the Secretary additional authority to impose a penalty on manufacturers that submit inaccurate information and increasing the penalties for not complying with reporting requirements.^45 ,46 

Increasing Supplemental Rebates

Due to the structure of the MDRP, state levers to negotiate supplemental rebate agreements have primarily been limited to PDL placement. In addition, as statutory rebates have increased over time, state supplemental rebates have grown much more slowly and declined as a share of total rebates.^47 ,48  In recent years, states have been exploring new approaches to try to obtain larger supplemental rebates from manufacturers.

Some policy proposals focus on increasing purchasing power to negotiate additional supplemental rebates. For example, aligning PDLs across FFS and MCOs may provide more leverage for a state negotiating with a manufacturer. As of fiscal year 2019, at least 17 states had a uniform PDL for one or more drug classes.⁴⁹  California has proposed negotiating rebates across all state programs, not just Medicaid.⁵⁰ 

PBMs have been another area of focus for state efforts to increase supplemental rebates. Much activity in this area involves increased transparency about PBM practices by, for example, requiring PBMs to report their discounts, rebates and profits to the state to ensure that the state is receiving the maximum rebates possible. More than half of states have passed a law addressing some aspect of PBM practices and transparency.⁵¹  Other states have enacted or are considering broader transparency laws to obtain pricing information from manufacturers in an effort to better understand prices paid by different parties in the production and payment chain for prescription drugs.

Other state efforts include expanding the scope of supplemental rebates—for example, by extending supplemental rebates to MCOs—or adding an inflationary component to supplemental rebates.^52 ,53 

Value-Based Purchasing

A final way in which states have been pursuing supplemental rebates is through value-based purchasing. With the increasing number of high-price, breakthrough drugs that cost hundreds of thousands up to millions of dollars, states are examining ways to pay for these therapies within their constrained budgets. Some states are pursuing alternative payment methods, or paying for value, as possible solutions. States have authority to pursue these agreements, but they must fit within the parameters of the MDRP. Given the best price provision, which leads manufacturers to hesitate to offer lower prices, states have opted to craft their arrangements under the umbrella of supplemental rebates, which are exempt from best price. While referred to colloquially as “value-based payment,” most agreements so far do not condition payment on clinical outcomes.

As of October 2019, six states have approval to implement alternative payment models via supplemental rebates.⁵⁴  These states include Louisiana and Washington, both of which are implementing a subscription model (also known as the “Netflix model”) to pay for hepatitis C drugs. Some legislative proposals would provide further authority for states to enter into risk-sharing, value-based contracts with manufacturers for outpatient drugs that are potentially curative treatments.^55 ,56  These agreements would be treated like supplemental rebates for the purpose of calculating AMP and best price.

Opting Out of the MDRP

Some policy discussion in recent years has been about opting out of or eliminating the MDRP, which essentially creates an open formulary, to allow states to use closed formularies in Medicaid, under which only specific drugs in each therapeutic class are covered. Some argue that allowing states to implement these “widely-used commercial tools”⁵⁷  would allow states to negotiate greater rebates, because each manufacturer would want their drug to be included as one of the few drugs for the therapeutic class. The Trump Administration has expressed interest in this approach, and the FY 2019 budget called for a new Medicaid demonstration authority to enable up to five state Medicaid programs to create their own formularies and negotiate directly with manufacturers instead of participating in the Medicaid Drug Rebate Program.^58 ,59  States are showing limited interest in the idea, though some states have expressed interest in a closed formulary that still obtains MDRP rebates.^60 ,61  However, as of October 2019, the federal government has not approved waiver requests for this approach.⁶² 

Changing Rebates or Prices in Other Programs

While not specifically targeted to Medicaid or MDRP, policy proposals to change the structure of rebates or prices in Medicare and the private market also affect Medicaid. These indirect effects occur because many proposals affect list prices or AMP, which in turn affect Medicaid rebate calculations. For example, in early 2019, the Trump administration released a proposed rule that would have excluded rebate payments by drug manufacturers to PBMs, Medicare Part D plan sponsors, and Medicaid managed care organization (MCO) plan sponsors from “safe harbor” protections that make these payments exempt from anti-kickback penalties. The Administration withdrew the idea, but analyses of the proposal at the time indicated that it would increase Medicaid spending. This outcome would occur through decreased list prices by manufacturers, which would lower the inflationary Medicaid rebate.⁶³  Similarly, proposals (such as those made by the Administration⁶⁴  and by House Democrats) to align Medicare drug prices more closely with drug prices in other countries could have implications for Medicaid rebates and ultimately Medicaid drug spending by changing drug list prices. Policy changes that would allow the federal government to negotiate Medicare prices also may have implications for Medicaid, depending on how the price applies to the wider marketplace and the prices used to set Medicaid rebates.⁶⁵ 

Summary

The MDRP helps offset federal and state costs of most outpatient prescription drugs dispensed to Medicaid beneficiaries and ensures access to medication for Medicaid beneficiaries. While gross prescription drug costs continue to grow, the Medicaid Drug Rebate Program has held net Medicaid costs largely flat over the past few years. There continues to be growing national attention around the issue of high drug prices and as a result, both states and the federal government are considering a variety of policies to address prescription drug costs. Because of the key role Medicaid plays in providing drugs for beneficiaries and setting the floor for prices, it is important for policy makers to understand the implications of any proposed policies for the rebate program.

1.   United States Senate Special Committee on Aging, Prescription Drug Pricing: Are We Getting Our Money’s Worth? (U.S. Government Printing Office, 1989), https://www.aging.senate.gov/imo/media/doc/reports/rpt289.pdf. ↩︎
2. Ramsey Baghdadi, “Medicaid Best Price,” Health Affairs (August 2017), https://www.healthaffairs.org/do/10.1377/hpb20171008.000173/full/. ↩︎
3. For individuals with incomes above 150% of the FPL, rules allow states to establish higher cost sharing, including coinsurance of up to 20% of the cost of the drug, for non-preferred drugs. See 78 Federal Register 42159-42322 (July 15, 2013), and Laura Snyder and Robin Rudowitz, Premiums and Cost-sharing in Medicaid (Kaiser Family Foundation, February 2013), https://modern.kff.org/medicaid/issue-brief/premiums-and-cost-sharing-in-medicaid-a-review-of-research-findings/. ↩︎
4. State Health Facts, “Medicaid Benefits: Prescription Drugs, 2018,” KFF, https://modern.kff.org/medicaid/state-indicator/prescription-drugs. ↩︎
5. 42 U.S.C. § 1396b (m)(2)(A)(xiii) ↩︎
6. Kaiser Family Foundation, Medicaid’s Prescription Drug Benefit: Key Facts (KFF, May 2019), https://modern.kff.org/medicaid/fact-sheet/medicaids-prescription-drug-benefit-key-facts/. ↩︎
7. Medicaid statute defines Best Price as “the lowest price available from the manufacturer during the rebate period to any wholesaler, retailer, provider, health maintenance organization, nonprofit entity, or government entity within the United States.” There are many important exclusions, including the Department of Veterans Affairs, the 340B program, the Department of Defense, the Public Health Service, the Indian Health Service. The Best Price includes rebates in general, but not Medicaid supplemental rebates or rebates provided through the Medicaid Drug Rebate Program. 42 U.S.C. 1396r-8 (c)(1)(C). ↩︎
8. Single source drugs and multiple source innovator drugs are those approved under a “new drug” application with the FDA. ↩︎
9. 42 U.S.C. § 1396r-8 (c) (1)(C) ↩︎
10. 42 U.S.C. § 1396r-8 (k) (1)(A) ↩︎
11. This price does include discounts provided to retail pharmacies but does not include service fees or rebates or discounts to other purchasers (like MCOs and PBMs), see 42 U.S.C. § 1396r-8 (k) (1)(B). ↩︎
12. Medicaid and CHIP Payment and Access Commission, Medicaid Payment for Outpatient Prescription Drugs (Medicaid and CHIP Payment and Access Commission, May 2018), https://www.macpac.gov/wp-content/uploads/2015/09/Medicaid-Payment-for-Outpatient-Prescription-Drugs.pdf. ↩︎
13. Office of the Inspector General, U.S. Department of Health and Human Services, Medicaid Rebates for Brand-name Drugs Exceeded Part D Rebates by a Substantial Margin, OEI-03-13-00650 (HHS OIG, April 2015), https://oig.hhs.gov/oei/reports/oei-03-13-00650.pdf. ↩︎
14. Due to rising costs over time, some rebates could exceed 100% of AMP. ↩︎
15. Centers for Medicare and Medicaid Services, “Medicaid Pharmacy Supplemental Rebate Agreements (SRA), As of June 2019,” https://www.medicaid.gov/medicaid-chip-program-information/by-topics/prescription-drugs/downloads/xxxsupplemental-rebates-chart-current-qtr.pdf. ↩︎
16. Richard Cauchi, Pharmaceutical Bulk Purchasing (National Council of State Legislatures, May 2019), http://www.ncsl.org/research/health/bulk-purchasing-of-prescription-drugs.aspx. ↩︎
17. 42 U.S.C. § 1396r-8  (b) (3) ↩︎
18. States retain a portion of the rebate based on their FMAP, and the remainder that is owed to the federal government is subtracted from federal payments to states. ↩︎
19. This includes the state share. See Cindy Mann,  “Re: Medicaid Prescription Drugs, Methodology for Calculating the Estimated Quarterly Rebate Offset Amount,” CMS, https://www.medicaid.gov/Federal-Policy-Guidance/downloads/SMD10019.pdf. ↩︎
20. State Health Facts, “Total Medicaid MCO Enrollment, 2017”, KFF, https://modern.kff.org/other/state-indicator/total-medicaid-mco-enrollment/. ↩︎
21. Kathleen Gifford, Eileen Ellis, Barbara Coulter Edwards, Aimee Lashbrook, Elizabeth Hinton, Larisa Antonisse, and Robin Rudowitz, States Focus on Quality and Outcomes Amid Waiver Changes: Results from a 50-State Medicaid Budget Survey for State Fiscal Years 2018 and 2019 (KFF, October 2018), https://modern.kff.org/medicaid/report/states-focus-on-quality-and-outcomes-amid-waiver-changes-results-from-a-50-state-medicaid-budget-survey-for-state-fiscal-years-2018-and-2019/. ↩︎
22. States that use PBMs in administering the prescription drug benefit in a fee-for-service setting pay the PBM administrative fees for these services. See Magellan Health, Medicaid Pharmacy Trend Report, Second Edition (Magellan Rx Management, 2017), https://www1.magellanrx.com/media/671872/2017-mrx-medicaid-pharmacy-trend-report.pdf. ↩︎
23. Sarah Lanford and Maureen Hensley-Quinn, New PBM Laws Reflect States’ Targeted Approaches to Curb Prescription Drug Costs (National Academy for State Health Policy, August 2019), https://nashp.org/new-pbm-laws-reflect-states-targeted-approaches-to-curb-prescription-drug-costs/. ↩︎
24. Lanford and Hensley-Quinn, New PBM Laws Reflect States’ Targeted Approaches to Curb Prescription Drug Costs (NASHP, August 2019), https://nashp.org/new-pbm-laws-reflect-states-targeted-approaches-to-curb-prescription-drug-costs/. ↩︎
25. Eligible covered entities include the following: federally qualified health centers, federally qualified health center look-alikes, native Hawaiian health centers, tribal/urban Indian health centers, Ryan White HIV/AIDS Program grantees, children’s hospitals, critical access hospitals, disproportionate share hospitals, freestanding cancer hospitals, rural referral centers, sole community hospitals, black lung clinics, comprehensive hemophilia diagnostic treatment centers, Title X family planning clinics, sexually transmitted disease clinics, and tuberculosis clinics. See MACPAC, The 340B Drug Pricing Program and Medicaid Drug Rebate Program: How They Interact (MACPAC, May 2018), https://www.macpac.gov/wp-content/uploads/2018/05/340B-Drug-Pricing-Program-and-Medicaid-Drug-Rebate-Program-How-They-Interact.pdf. ↩︎
26. Mike McCaughan, “The 340B Drug Discount Program, Health Affairs (September 2017), https://www.healthaffairs.org/do/10.1377/hpb20171024.663441/full/. ↩︎
27. 42 U.S.C. § 1396r-8  (a) (5) ↩︎
28. Providers can choose whether they “carve in” — use drugs purchased under the 340B program for Medicaid beneficiaries — or “carve out” — the provider does not use drugs purchased under 340B and the drugs are eligible for the Medicaid Rebate Program. HRSA uses a Medicaid Exclusion File to track drugs purchased under 340B but, this method only applies to FFS Medicaid. States must have their own methods for managed care beneficiaries. See Office of Pharmacy Affairs, Clarification on Use of the Medicaid Exclusion File (HHS Health Resources and Services Administration, December 2014), https://www.hrsa.gov/sites/default/files/opa/programrequirements/policyreleases/clarification-medicaid-exclusion.pdf. ↩︎
29. MACPAC, The 340B Drug Pricing Program and Medicaid Drug Rebate Program: How They Interact (MACPAC, May 2018), https://www.macpac.gov/wp-content/uploads/2018/05/340B-Drug-Pricing-Program-and-Medicaid-Drug-Rebate-Program-How-They-Interact.pdf. ↩︎
30. The Medicaid Exclusion File (MEF) is maintained by the Health Resources and Services Administration (HRSA). See MACPAC, The 340B Drug Pricing Program and Medicaid Drug Rebate Program: How They Interact (MACPAC, May 2018), https://www.macpac.gov/wp-content/uploads/2018/05/340B-Drug-Pricing-Program-and-Medicaid-Drug-Rebate-Program-How-They-Interact.pdf. ↩︎
31. 42 Federal Register 27497-27901, (May 6, 2016). ↩︎
32. HRSA guidance states that contract pharmacies are prohibited from dispensing 340B drugs to Medicaid beneficiaries unless the covered entity, contract pharmacy, and Medicaid agency establish “an arrangement to prevent duplicate discounts” and notify HRSA of the arrangement. See Office of Pharmacy Affairs, Clarification on Use of the Medicaid Exclusion File (HHS Health Resources and Services Administration, December 2014), https://www.hrsa.gov/sites/default/files/opa/programrequirements/policyreleases/clarification-medicaid-exclusion.pdf. ↩︎
33. The Covered Outpatient Drug final rule requires states to reimburse 340B covered entities at actual acquisition cost (AAC) plus a professional dispensing fee (PDF) up to the 340B ceiling price. AAC for 340B drugs may be lower than Medicaid prices but these “below-ceiling” prices may be difficult for states to obtain. The AAC requirement only applies to FFS Medicaid drugs, drugs covered by MCOs in Medicaid are not subject to this requirement. See 81 Federal Register 5169-5357, (February 1, 2016) and CMS, Covered Outpatient Drug Final Rule with Comment (CMS-2345-FC) Frequently Asked Questions (CMS, July 2016), https://www.medicaid.gov/federal-policy-guidance/downloads/faq070616.pdf. ↩︎
34. For covered entities that carve in to 340B, the AAC would generally be the 340B ceiling price. There is some potential for spread pricing in Medicaid if a covered entity purchases drugs at sub-ceiling prices. See MACPAC, The 340B Drug Pricing Program and Medicaid Drug Rebate Program: How They Interact (MACPAC, May 2018), https://www.macpac.gov/wp-content/uploads/2018/05/340B-Drug-Pricing-Program-and-Medicaid-Drug-Rebate-Program-How-They-Interact.pdf. ↩︎
35. Totals include state and federal spending. See MACPAC, Medicaid Drug Spending Trends (MACPAC, February 2019), https://www.macpac.gov/wp-content/uploads/2019/02/Medicaid-Drug-Spending-Trends.pdf. ↩︎
36. Boards of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds, 2018 Annual Report of the Board of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds (CMS, June 2018), https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/ReportsTrustFunds/Downloads/TR2018.pdf. ↩︎
37. Congressional Budget Office, How the Medicaid Rebate on Prescription Drugs Affects Pricing in the Pharmaceutical Industry (CBO, January 1996), https://www.cbo.gov/sites/default/files/104th-congress-1995-1996/reports/1996doc20.pdf   ↩︎
38. Douglas W. Elmendorf, Letter to Hon. Paul Ryan, Ranking Member on the Committee on the Budget (Congressional Budget Office, November 2010), https://www.cbo.gov/sites/default/files/111th-congress-2009-2010/reports/11-04-drug_pricing.pdf. ↩︎
39. MACPAC, Next Steps in Improving Medicaid Prescription Drug Policy (MACPAC, June 2019), https://www.macpac.gov/wp-content/uploads/2019/06/Next-Steps-in-Improving-Medicaid-Prescription-Drug-Policy.pdf. ↩︎
40. MACPAC, Next Steps in Improving Medicaid Prescription Drug Policy (MACPAC, June 2019), https://www.macpac.gov/wp-content/uploads/2019/06/Next-Steps-in-Improving-Medicaid-Prescription-Drug-Policy.pdf. ↩︎
41. Fair AMP Act, H.R.3276, 116th Congress (2019). ↩︎
42. Continuing Appropriations Act, 2020, and Health Extenders Act of 2019, H.R.4378, 116th Congress (2019). ↩︎
43. CBO, Proposals Affecting Health Programs in Budget Function 550 – CBO’s Estimate of the President’s Fiscal Year 2020 Budget (CBO, May 2019), https://www.cbo.gov/system/files/2019-05/55208-healthprograms.pdf. ↩︎
44. Jay Hancock and Sydney Lupkin, “Drugmakers Master Rolling Out Their Own Generics To Stifle Competition,” Kaiser Health News (August 5, 2019), https://kffhealthnews.org/news/drugmakers-now-masters-at-rolling-out-their-own-generics-to-stifle-competition/. ↩︎
45. MACPAC, Improving Operations of the Medicaid Drug Rebate Program (MACPAC, June 2018), https://www.macpac.gov/wp-content/uploads/2018/06/Improving-Operations-of-the-Medicaid-Drug-Rebate-Program.pdf. ↩︎
46. MACPAC recommendations include providing the Secretary with the authority to reclassify drugs that are incorrectly classified as well as to levy intermediate monetary penalties. The Senate Finance Committee Bill would increase oversight of rebates by requiring CMS to conduct regular audits of drug manufacturers’ pricing information and submit those audits to Congress. The Secretary of HHS would have the authority to impose a penalty on manufacturers that submit inaccurate information and would increase penalties for not complying with reporting requirements. See: https://www.finance.senate.gov/imo/media/doc/FINAL%20Description%20of%20the%20Chairman’s%20Mark%20for%20the%20Prescription%20Drug%20Pricing%20Reduction%20Act%20of%202019.pdf. ↩︎
47. KFF analysis of CMS-64 data. ↩︎
48. Office of Inspector General, HHS, States’ Collection of Offset and Supplemental Medicaid Rebates (HHS OIG, December 2014), https://oig.hhs.gov/oei/reports/oei-03-12-00520.pdf. ↩︎
49. Gifford, Ellis, Edwards, Lashbrook, Hinton, Antonisse, and Rudowitz, States Focus on Quality and Outcomes Amid Waiver Changes: Results from a 50-State Medicaid Budget Survey for State Fiscal Years 2018 and 2019 (KFF, October 2018), https://modern.kff.org/report-section/states-focus-on-quality-and-outcomes-amid-waiver-changes-pharmacy-and-opioid-strategies/. ↩︎
50. Gabriel Petek, The 2019-20 Budget: Analysis of the Carve Out of Medi-Cal Pharmacy Services From Managed Care (California State Legislative Analyst’s Office, April 2019), https://lao.ca.gov/Publications/Report/3997. ↩︎
51. Lanford and Hensley-Quinn, New PBM Laws Reflect States’ Targeted Approaches to Curb Prescription Drug Costs (NASHP, August 2019), https://nashp.org/new-pbm-laws-reflect-states-targeted-approaches-to-curb-prescription-drug-costs/. ↩︎
52. Pew Charitable Trusts, Use of State Medicaid Inflation Rebates Could Discourage Drug Price Increases (Pew, June 2018), https://www.pewtrusts.org/-/media/assets/2018/06/implementingstatemedicaidinflationrebatescoulddiscouragedrugpriceincreases_factsheet.pdf. ↩︎
53. An Act to Improve Health Care by Investing in Value, Massachusetts Bill H.4134, 191st Legislature (2019). ↩︎
54. Two states have moved forward with a subscription-based model: Louisiana reached an agreement with Gilead to treat more than 31,000 people in the state with hepatitis C under a modified subscription model over the next five years. The agreement allows the state to cap gross spending at a fixed amount. Washington state received approval from CMS to negotiate a fixed annual amount to pay for hepatitis C drugs and entered into a contract with AbbVie. Oklahoma has executed four alternative payment model agreements with manufacturers related to financial outcomes, including adherence, costs and hospitalizations. If the drug fails to meet certain benchmarks, the manufacturer will make additional payments to the state in the form of a supplemental rebate.  Massachusetts, Colorado, and Michigan have received approval from CMS to enter into value or outcomes-based supplemental rebate agreements with drug manufacturers. ↩︎
55. U.S. Senate Committee on Finance, Description of the Chairman’s Mark: The Prescription Drug Pricing Reduction Act (PDPRA) of 2019 (Senate Finance, July 2019), https://www.finance.senate.gov/imo/media/doc/FINAL%20Description%20of%20the%20Chairman’s%20Mark%20for%20the%20Prescription%20Drug%20Pricing%20Reduction%20Act%20of%202019.pdf. ↩︎
56. Rachel Sachs, “Understanding the Senate Finance Committee’s Drug Pricing Package,” Health Affairs (July 26, 2019), https://www.healthaffairs.org/do/10.1377/hblog20190726.817822/full/. ↩︎
57. Office of Medicaid, Executive Office of Health and Human Services, MassHealth Section 1115 Demonstration Amendment Request (Commonwealth of Massachusetts EOHHS, Office of Medicaid, September 2017), https://www.mass.gov/files/documents/2017/10/27/masshealth-section-1115-demonstration-amendment-request-09-08-17.pdf. ↩︎
58. Prices negotiated through this demonstration would be exempt from Best Price. These states would also maintain an appeals process for non-covered drugs. ↩︎
59. HHS, Putting America’s Health First: FY 2019 President’s Budget for HHS (HHS, February 2018), https://www.hhs.gov/sites/default/files/fy-2019-budget-in-brief.pdf. ↩︎
60. Office of Medicaid, EOHHS, MassHealth Section 1115 Demonstration Amendment Request (Commonwealth of Massachusetts EOHHS, Office of Medicaid, September 2017), https://www.mass.gov/files/documents/2017/10/27/masshealth-section-1115-demonstration-amendment-request-09-08-17.pdf. ↩︎
61. Division of TennCare, TennCare II Demonstration: Amendment 42 DRAFT (Division of TennCare, September 2019), https://www.tn.gov/content/dam/tn/tenncare/documents2/TennCareAmendment42.pdf. ↩︎
62. Virgil Dickson, “CMS denies Massachusetts’ request to choose which drugs Medicaid covers,” Modern Healthcare (June 27, 2018), https://www.modernhealthcare.com/article/20180627/NEWS/180629925/cms-denies-massachusetts-request-to-choose-which-drugs-medicaid-covers. ↩︎
63. CBO, Incorporating the Effects of the Proposed Rule on Safe Harbors for Pharmaceutical Rebates in CBO’s Budget Projections (CBO, May 2019), https://www.cbo.gov/system/files/2019-05/55151-SupplementalMaterial.pdf. ↩︎
64. 83 Federal Register 54546-54561, (October 30, 2018). ↩︎
65. Office of the Actuary, Financial Impact of Titles I and II of H.R. 3, “Lower Drug Costs Now Act of 2019 (CMS, October 2019), https://www.scribd.com/document/429847530/HR3-TitleI-II-Memo. ↩︎

This report provides an analysis of donor government funding to address family planning in low- and middle-income countries in 2018, the latest year available, as well as trends over time. It is part of an effort by the Kaiser Family Foundation to track such funding that began after the London Summit on Family Planning in 2012. Key findings include the following:

• DONOR GOVERNMENT FUNDING FOR FAMILY PLANNING REACHED ITS HIGHEST LEVEL IN 2018. In 2018, donor government funding rose from $1.26 billion in 2017 to $1.50 billion (an increase of $237.3 million or 19%, as measured in current terms); funding increased even after accounting for inflation and currency fluctuations.¹  This was the second year of increases after two years of declines, and the highest level of funding since the 2012 Summit.
• MOST DONORS INCREASED BILATERAL FUNDING FOR FAMILY PLANNING IN 2018. Among the 10 donor governments profiled, seven provided increased bilateral funding (Canada, Denmark, Germany, the Netherlands, Norway, the U.K., and the U.S.) and three decreased (Australia, France, and Sweden); these trends were the same in currency of origin. The U.S. increase in 2018 was largely due to the timing of disbursements and does not reflect an actual increase in U.S. appropriations by Congress, which have been flat for several years.
• THE U.S. CONTINUES TO BE THE LARGEST DONOR TO FAMILY PLANNING. The U.S. was the largest bilateral donor to family planning in 2018, providing $630.6 million or 42% of total bilateral funding from governments. The U.K. (US$292.2 million, 19%) was the second largest donor, followed by the Netherlands (US$215.6 million, 14%), Sweden (US$107.0 million, 7%), and Canada (US$81.8 million, 5%).
• SINCE THE LONDON SUMMIT IN 2012, MOST DONOR GOVERNMENTS HAVE INCREASED FUNDING AND OVERALL FUNDING HAS RISEN BY MORE THAN US$400 MILLION. Among the 10 donor governments profiled, eight have increased bilateral funding since the London Summit in 2012 (Canada, Denmark, Germany, the Netherlands, Norway, Sweden, the U.K., and the U.S.). The U.S. increase was the largest over the period (US$145.6 million), followed by the Netherlands (US$110.2 million), Sweden (US$65.8 million), Canada (US$40.3 million), and the U.K. (US$39.4 million).
• DONORS ALSO INCREASED FUNDING TO UNFPA. In addition to bilateral disbursements for family planning, donor governments profiled also provided US$373.9 million in core contributions to UNFPA in 2018, an increase of US$29.5 million compared to the 2017 level (US$344.4 million).²  Sweden provided the largest core contribution to UNFPA in 2018 (US$83.0 million), followed by Norway (US$63.8 million), the Netherlands (US$37.5 million), and Denmark (US$37.1 million).For the second year in a row, the U.S. administration invoked the Kemp-Kasten amendment to withhold funding from UNFPA.

Introduction

This report provides the latest data on donor government resources available for family planning activities in low- and middle-income countries. It is part of an effort by the Kaiser Family Foundation that began after the London Summit on Family Planning in 2012 at which the global community pledged to expand contraceptive access to an additional 120 million women and girls by 2020.³  Stakeholders reconvened at The Family Planning Summit for Safer, Healthier and Empowered Futures in 2017 and made new and renewed commitments to global family planning goals.⁴ 

This current report provides data on donor government disbursements in 2018, the most recent year available. It includes data from all 30 members of the Organisation for Economic Co-operation and Development (OECD)’s Development Assistance Committee (DAC), as well as non-DAC members where data are available.⁵  Data are collected directly from donors and supplemented with data from the DAC. Ten donor governments that account for 98% of total disbursements for family planning are profiled in this analysis. Both bilateral assistance and core contributions to UNFPA are included. For more detail, see the below methodology. For information on family planning funding from other sources (e.g. multilateral organizations, foundations, etc.) see Appendix 1.

Findings

Bilateral Disbursements

In 2018, donor governments disbursed US$1.50 billion in bilateral funding for family planning activities (see Figure 1, Table 1 & Appendix 2), an increase of US$237.3 million (19%) compared to the 2017 level (US$1.26 billion) and the highest level of funding since tracking efforts began following the 2012 London Summit (even after adjusting for inflation and currency fluctuation). This was the second year of increases after two years of declines.

.

Among the ten donors profiled, seven increased funding in 2018 (Canada, Denmark, Germany, the Netherlands, Norway, the UK, and the US) and three decreased (Australia, France, and Sweden); these trends were the same in currency of origin.

Approximately two-thirds of the overall increase in 2018 was due to an increase in funding from the U.S., the world’s largest donor. In 2018, U.S. disbursements totaled US$630.6 million, an increase of US$155.9 million (33%) compared to 2017 (US$474.7 million). The U.S. increase in 2018 was largely due to the timing of disbursements and does not reflect an actual increase in U.S. appropriations by Congress, which have been flat for several years (see Figure 2 and Box 1). The remaining increase reflects actual increased disbursements from Canada, Denmark, Germany, the Netherlands, Norway, and the U.K.

.

The U.S. was the largest donor to family planning, accounting for 42% of donor government disbursements (see Figure 3). The U.K. (19%) was the second largest donor followed by the Netherlands (14%), Sweden (7%), and Canada (5%).

.

Since the London Summit in 2012, most donor governments have increased funding for family planning and overall funding has risen by US$405.1 million (37%) (see Figure 4 & Table 1). Eight of the ten donor governments profiled (Canada, Denmark, Germany, the Netherlands, Norway, Sweden, the U.K., and the U.S.) increased funding over the period (see Figure 5). The U.S. was the largest cumulative increase over the period (US$145.6 million), though largely due to fluctuations in disbursement rates. The Netherlands (US$110.2 million) was the second largest cumulative increase, followed by Sweden (US$65.8 million), Canada (US$40.3 million), and the U.K. (US$39.4 million). Five of the donors profiled (Canada, Denmark, the Netherlands, Norway, and Sweden) doubled or more than doubled bilateral family planning funding over the period. It should be noted that the dip in funding in 2015 and 2016 was primarily due to an increase in the value of the U.S. dollar against all other currencies as well as disbursement delays by the U.S.

.

Donor Contributions to UNFPA

While the majority of donor government assistance for family planning is provided bilaterally, donors also provide support for family planning activities through contributions to the United Nations Population Fund (UNFPA). Most of UNFPA’s funding is from donor governments, which provide funding in two ways: 1) donor directed or earmarked contributions for specific activities (e.g. donor contributions to the UNFPA Supplies), which are included as part of bilateral funding above; and 2) general contributions to “core” activities that are untied and meant to be used for both programmatic activities (e.g. family planning, population and development, HIV/AIDS, gender, and sexual and reproductive health and rights) and operational support as determined by UNFPA.

In 2018, donor governments profiled provided US$373.9 million in core contributions to UNFPA, an increase of US$29.5 million (9%) compared to the 2017 level (US$344.4 million). Among the donors profiled, two increased funding (Norway and Sweden), five remained flat (Australia, Canada, France, Germany, and the U.K.), and two declined (Denmark and the Netherlands). The U.S. did not provide any funding to UNFPA in 2018 (see Box 2).⁶ 

Sweden provided the largest core contribution to UNFPA in 2018 (US$83.0 million), followed by Norway (US$63.8 million), the Netherlands (US$37.5), and Denmark (US$37.1 million) (see Figure 6 and Table 2). Among the ten donors profiled, one donor – Norway – provided a larger contribution to UNFPA’s core resources than their total bilateral disbursement for family planning.

.

Looking Ahead

While donor government funding for family planning reached the highest level since this tracking effort began, a significant share of that increase was due to the timing of disbursements by the U.S. The U.S. increase may be temporary as annual appropriations have been relatively flat in recent years. Family planning funding from most of the remaining nine donors, all of which made new or renewed commitments at the Family Planning Summit in 2017, increased in both 2017 and 2018. These years have also seen funding growth in broader Sexual and Reproductive Health and Rights (SRHR) among a subset of donor governments. Ongoing tracking of whether these trends continue will be important for assessing the post-2020 agenda.

Methodology

Bilateral and multilateral data on donor government assistance for family planning (FP) in low- and middle-income countries were collected from multiple sources. The research team collected the latest bilateral assistance data directly for 10 governments: Australia, Canada, Denmark, Germany, France, the Netherlands, Norway, Sweden, the United Kingdom, and the United States during the first half of 2019. Data represent the fiscal year 2017 period for all governments. Direct data collection from these donors was desirable because they represent the preponderance of donor government assistance for family planning and the latest official statistics – from the Organisation for Economic Co-operation and Development (OECD) Creditor Reporting System (CRS) (see: http://www.oecd.org/dac/stats/data) – which are from 2017 and do not include all forms of international assistance (e.g., funding to countries such as Russia and the Baltic States that are no longer included in the CRS database). In addition, the CRS data may not include certain funding streams provided by donors, such as FP components of mixed-purpose grants to non-governmental organizations. Data for all other OECD DAC member governments – Austria, Belgium, Czech Republic, the European Union, Finland, Greece, Hungary, Iceland, Ireland, Italy, Japan, Korea, Luxembourg, New Zealand, Poland, Portugal, the Slovak Republic, Slovenia, Spain, and Switzerland – which collectively accounted for approximately 2 percent of bilateral family planning disbursements, were obtained from the OECD CRS and are from calendar year 2017.

For purposes of this analysis, funding was counted as family planning if it met the OECD CRS purpose code definition: “Family planning services including counseling; information, education and communication (IEC) activities; delivery of contraceptives; capacity building and training.”⁷  Where it was possible to identify funding amounts, family-planning-related activities funded in the context of other official development assistance sectors (e.g. education, civil society) are included in this analysis. Project-level data were reviewed for Canada, Denmark, France, Germany, the Netherlands, Norway, and Sweden to determine whether all or a portion of the funding could be counted as family planning. Family-planning-specific funding totals for the United States were obtained through direct data downloads and communications with government representatives. Funding attributed to Australia and the United Kingdom is based on a revised Muskoka methodology as agreed upon by donors at the London Summit on Family Planning in 2012. Funding totals presented in this analysis should be considered preliminary estimates based on data provided by representatives of the donor governments who were contacted directly.

It was difficult in some cases to disaggregate bilateral family planning funding from broader population, reproductive and maternal health totals, as the two are sometimes represented as integrated totals. In addition, family-planning-related activities funded in the context of other official development assistance sectors (e.g. education, civil society) have in the past remained largely unidentified. For purposes of this analysis, we worked closely with the largest donors to family planning to identify such family-planning-specific funding where possible. In some cases (e.g. Canada), specific FP percentages were recorded for mixed-purpose projects. In other cases, it was possible to identify FP-specific activities by project titles in languages of origin, notwithstanding less-specific financial coding. In still other cases, detailed project descriptions were analyzed (see Appendix 2 for detailed data table).

Bilateral funding is defined as any earmarked (FP-designated) amount and includes family planning-specific contributions to multilateral organizations (e.g. non-core contributions to UNFPA Supplies). U.S. bilateral data correspond to amounts disbursed for the 2018 fiscal year. UNFPA contributions from all governments correspond to amounts received during the 2018 calendar year, regardless of which contributor’s fiscal year such disbursements pertain to.

With some exceptions, bilateral assistance data were collected for disbursements. A disbursement is the actual release of funds to, or the purchase of goods or services for, a recipient. Disbursements in any given year may include disbursements of funds committed in prior years and in some cases, not all funds committed during a government fiscal year are disbursed in that year. In addition, a disbursement by a government does not necessarily mean that the funds were provided to a country or other intended end-user. Enacted amounts represent budgetary decisions that funding will be provided, regardless of the time at which actual outlays, or disbursements, occur. In recent years, most governments have converted to cash accounting frameworks, and present budgets for legislative approval accordingly; in such cases, disbursements were used as a proxy for enacted amounts.

UNFPA core contributions were obtained from United Nations Executive Board documents. UNFPA estimates of total family planning funding provided from both core and non-core resources were obtained through direct communications with UNFPA representatives. Other than core contributions provided by governments to UNFPA, un-earmarked core contributions to United Nations entities, most of which are membership contributions set by treaty or other formal agreement (e.g., United Nations country membership assessments), are not identified as part of a donor government’s FP assistance even if the multilateral organization in turn directs some of these funds to FP. Rather, these would be considered as FP funding provided by the multilateral organization, and are not considered for purposes of this report.

The fiscal year period varies by country. The U.S. fiscal year runs from October 1-September 30. The Australian fiscal year runs from July 1-June 30. The fiscal years for Canada and the U.K. are April 1-March 31. Denmark, France, Germany, the Netherlands, Norway, and Sweden use the calendar year. The OECD uses the calendar year, so data collected from the CRS for other donor governments reflect January 1-December 31. Most UN agencies use the calendar year and their budgets are biennial.

All data are expressed in US dollars (USD). Where data were provided by governments in their currencies, they were adjusted by average daily exchange rates to obtain a USD equivalent, based on foreign exchange rate historical data available from the U.S. Federal Reserve (see: http://www.federalreserve.gov/) or in some cases from the OECD. Data obtained from UNFPA were already adjusted by UNFPA to represent a USD equivalent based on date of receipts.

1. Totals represent disbursements specifically designated by donor governments for family planning as defined by the OECD DAC (see methodology), and include: standalone family planning projects; family planning-specific contributions to multilateral organizations (e.g., contributions to UNFPA Supplies); and, in some cases, projects that include family planning within broader reproductive health activities. ↩︎
2. Includes core-contributions from members of the OECD DAC only; core contributions from non-DAC donors are not included in this total. ↩︎
3. FP2020, London Summit on Family Planning: Summaries of Commitments, December 2013, available at: http://www.familyplanning2020.org/about-us. ↩︎
4. FP2020, The Family Planning Summit for Safer, Healthier and Empowered Futures, July 2017, available at: http://summit2017.familyplanning2020.org/. ↩︎
5. Includes funding from 29 DAC member countries and the European Union (EU). ↩︎
6. In FY17 and FY18, the U.S. administration invoked the Kemp-Kasten amendment to withhold funding – both core and non-core contributions – to UNFPA. In FY16, U.S. contributions to UNFPA had totaled $69 million, including $30.7 million in core resources and an additional $38.3 million in non-core resources for other project activities (see KFF “UNFPA Funding & Kemp-Kasten: An Explainer”). ↩︎
7. OECD, The List of CRS Purpose Codes and Voluntary Budget Identifier Codes, June 2018. ↩︎
8. UNFPA, Direct communication, September, 2019. ↩︎
9. Bill & Melinda Gates Foundation, Direct communication, October, 2019. ↩︎