The rising cost of prescription drugs is currently a major focus for policymakers. One medication that has come under increasing scrutiny over its price increases is insulin, used by people with both Type 1 and Type 2 diabetes to control blood glucose levels. Among people with Medicare, one third (33%) had diabetes in 2016, up from 18% in 2000. The rate of diabetes is higher among certain groups, including more than 40% of black and Hispanic beneficiaries. Although not all people with diabetes take insulin, for many it is a life-saving medication and essential to maintaining good health. Three companies—Eli Lilly, Novo Nordisk, and Sanofi—manufacture most insulin products, and there are no generic insulin products currently available, despite the fact that insulin was discovered in the 1920s. Committees in both the House and the Senate recently convened hearings on prescription drug costs that focused on rising insulin prices and affordability concerns for patients, and congressional investigations are underway.

This data note examines spending on insulin by Medicare and beneficiaries enrolled in private Part D drug plans, based on data from the Centers for Medicare & Medicaid Services (see Data and Methods). Because drug-specific rebate data for Medicare are proprietary, the analysis examines Medicare spending without rebates, but also uses average Part D rebates reported by Medicare’s actuaries to illustrate the potential effects on total Part D insulin spending. While rebates may help to lower Part D premiums, they do not lower enrollees’ out-of-pocket drug costs, which are based on list prices.

Key Findings

• Total Medicare Part D spending on insulin increased by 840% between 2007 and 2017, from $1.4 billion to $13.3 billion (Figure 1)—including what Medicare, plans, and beneficiaries paid.

• With rising prices and the introduction of more costly insulin products over time, average total Medicare Part D spending per user on insulin products increased by 358% between 2007 and 2016, from $862 to $3,949.
• Aggregate out-of-pocket spending by Part D enrollees on insulin quadrupled between 2007 and 2016, from $236 million to $968 million, reflecting both an increase in the number of users and price increases for insulin. Among enrollees without low-income subsidies, average per capita out-of-pocket spending on insulin nearly doubled between 2007 and 2016 (from $324 to $588; an increase of 81%).
• Among all insulin products, Lantus Solostar, a long-acting insulin manufactured by Sanofi, accounted for the largest share of both total Part D spending and out-of-pocket spending by enrollees who used insulin. Spending on Lantus Solostar, which was used by 1.1 million Part D enrollees in 2017, accounted for 20% of total Part D spending on insulin therapies in 2017 and 25% of out-of-pocket spending on insulin by non-low income subsidy enrollees in 2016.

Total Medicare Part D Spending on Insulin

Including what Medicare, plans, and beneficiaries paid, Medicare Part D spending on insulin increased by 840% from $1.4 billion in 2007 to $13.3 billion in 2017. Learn more in this @KaiserFamFound analysis

According to our analysis, total Medicare Part D spending on insulin increased by 840% between 2007 and 2017, from $1.4 billion to $13.3 billion—including what Medicare, plans, and beneficiaries paid. In light of rising prices for existing insulin products and the introduction of more costly insulin therapies over time, average annual total Part D spending on insulin products per user increased by 358% between 2007 and 2016—from $862 to $3,949—while average total Medicare Part D spending per insulin prescription increased by 280% over these years—from $96 to $363 (Figure 2).

The total number of Part D enrollees using any insulin therapy nearly doubled between 2007 and 2016, from 1.6 million enrollees to 3.1 million—a much smaller increase in percentage terms (86%) than the percent increase in total Part D spending on insulin over the 2007-2016 period (753%) (Table 1). The total number of insulin prescriptions covered by Part D also increased over these years (from 14.8 million in 2007 to 33.3 million in 2016), but the percentage increase (125%) was also substantially lower than the percent increase in total insulin spending.

Total Part D spending on top insulin therapies. In 2017, the top five insulin therapies covered under Part D accounted for 62% of total Part D spending on insulin, or $8.2 billion out of the $13.3 billion total spending on insulin (Figure 3). Among all insulin products, Part D spending was highest for Lantus Solostar, a long-acting insulin manufactured by Sanofi, with $2.6 billion in Part D spending in 2017. This one drug alone, used by 1.1 million Part D enrollees in 2017, accounted for 20% of total Part D spending on insulin that year. Lantus Solostar was also among the top five drugs overall in terms of total Part D spending in 2017.

Average total Part D per capita costs for insulin therapy in 2017 ranged from $693 for Humulin R, a short-acting regular insulin manufactured by Eli Lilly—used by 102,000 Part D enrollees in 2017—to $10,014 for Humulin R U-500, a concentrated regular insulin for people who need large doses of insulin, also manufactured by Eli Lilly—used by 14,500 beneficiaries in 2017.

Total Part D spending by insulin manufacturer. In 2017, total Part D spending on all of the different insulin products from the three main manufacturers was $5.5 billion for Novo Nordisk, $4.8 billion for Sanofi, and $3.0 billion for Eli Lilly (Figure 4). Between 2007 and 2017, spending on insulin therapies from all three manufacturers increased dramatically. Over this time period, cumulative total Part D spending was $27.0 billion for insulin products from Novo Nordisk, another $27.0 billion for Sanofi, and $15.0 billion for Eli Lilly.

Trends in insulin spending per dosage unit. Of the 22 insulin therapies listed in the CMS Part D drug spending dashboard in both 2013 (the first year of dashboard data) and 2017 (the most recent year), 19 products had increases of more than 10% in annual Part D spending per dosage unit between 2013 and 2017, according to CMS estimates (Table 2). Six insulin products had increases of more than 10% in average spending per dosage unit between 2016 and 2017 alone (Figure 5).

These percentage increases in average spending per dosage unit for insulin products represent price increases that can translate to large increases in total spending per claim over time—even if the change in average spending per dosage unit measured in dollars may be relatively low—since there are typically multiple dosage units associated with each claim. For example, while Afrezza has the lowest average spending per dosage unit in 2017 of all the insulin products in the CMS dashboard data ($3.54), the 2016-2017 change of 21.6% was the largest in percent terms—and it translates into a large difference in spending per claim for Afrezza between 2016 and 2017—from $566 per claim in 2016 to $690 per claim in 2017, a $124 increase (Table 2).

Out-of-Pocket Spending on Insulin by Medicare Part D Enrollees

Part D enrollees’ total annual out-of-pocket costs for insulin. Since Medicare Part D plans cover a portion of enrollees’ total drug costs, enrollees pay less than the retail price of drugs covered by their plan, and those who receive Part D low-income subsidies (LIS) face relatively low out-of-pocket costs. Still, in the aggregate, out-of-pocket spending among all Part D enrollees on insulin quadrupled between 2007 and 2016, from $236 million to $968 million, reflecting both an increase in the number of users and price increases for insulin (Figure 6). Between 2007 and 2016, Part D enrollees spent a combined $5.5 billion out of pocket on insulin therapy.

Part D enrollees’ average per capita out-of-pocket costs for insulin. Among Part D enrollees who did not receive LIS, average per capita out-of-pocket spending for insulin alone was $588 in 2016, but including costs for all other prescriptions, total per capita out-of-pocket spending among those who used insulin was $1,334. Non-LIS enrollees’ average per capita out-of-pocket spending on insulin in 2016 was nearly double the amount in 2007 ($324; an increase of 81%).

For several insulin products, average per capita out-of-pocket spending by non-LIS enrollees increased by more than 100% between 2007 and 2016; for example, average per capita out-of-pocket spending on Lantus Solostar increased by 291% from $106 to $413 (Figure 7).

In 2016, average annual per capita out-of-pocket spending by non-LIS enrollees who used insulin therapies ranged from $110 for Levemir Flexpen, a long-acting insulin manufactured by Novo Nordisk, to $822 for Humulin R U-500 (Table 3).

Part D enrollees’ out-of-pocket spending on top insulin therapies. In 2016, the top five insulin therapies accounted for 67% of aggregate out-of-pocket spending on insulin by non-LIS enrollees that year, or $0.6 billion out of the $0.9 billion in out-of-pocket spending on insulin by non-LIS enrollees (Figure 8). Aggregate out-of-pocket spending was highest for Lantus Solostar, accounting for 25% ($230 million) of non-LIS enrollees’ total out-of-pocket spending on insulin therapy in 2016.

Illustrating the Potential Effect of Rebates on Total Insulin Spending

Our analysis is based on retail claims data and aggregated spending data that do not take into account manufacturer rebates and discounts to plans, which are considered proprietary and therefore not publicly available. There is data suggesting that insulin manufacturers have provided large rebates and discounts to payers that have produced net prices that are significantly lower than the high list prices that have attracted public scrutiny. Regardless of the magnitude of rebates for insulin products, however, rebates do not help to lower enrollees’ out-of-pocket costs for insulin. This is because the amount that enrollees pay out of pocket is either a flat dollar copayment (depending on their plan’s cost-sharing design) or, if they are paying full cost in the deductible phase or a coinsurance amount, their cost is based on pre-rebate list prices rather than post-rebate net prices.

Because CMS does not disclose drug-specific rebates, we are unable to know exactly the degree to which our estimates of total Part D spending on insulin therapy might overstate actual costs to Medicare and plans. We can approximate the potential effect of rebates on total Part D spending by assuming that all Part D plans had received for all insulin products the average rebate reported by Medicare’s actuaries each year between 2007 and 2017. Based on this assumption, insulin spending would have increased from $1.3 billion in 2007 (applying the 9.6% average rebate in 2007) to $10.3 billion in 2017 (applying the 22.8% estimated average rebate in 2017). This amounts to a 702% increase in total Part D spending on insulin between 2007 and 2017, compared to an 840% increase based on the pre-rebate total spending amounts ($1.4 billion and $13.3 billion, respectively). If actual rebates for insulin products were larger than these averages, total spending would be lower than these estimates.

Implications

Rising prices for insulin have attracted increasing scrutiny from policymakers in recent months. Our analysis demonstrates that rising insulin prices since 2007 have translated into significantly higher out-of-pocket spending for beneficiaries in Medicare Part D plans and higher spending for the program overall (not taking into account rebates). The number of people Medicare covers for insulin therapy has increased as the number of Medicare beneficiaries with diabetes has risen. Average annual total Part D spending per insulin user increased by 358% between 2007 and 2016, while average out-of-pocket costs for insulin by non-low income subsidy Part D enrollees nearly doubled.

Members of Congress and the Trump Administration have introduced several proposals that could help to address concerns about rising prices for insulin products and affordability concerns for patients, including banning rebates from drug manufacturers unless they are shared directly with patients at the point of sale, taking steps to increase the availability of generic products, allowing Medicare to negotiate drug prices, and allowing patients to import drugs from other countries. Rising prices for insulin therapy in recent years and the resulting increases in Medicare Part D and beneficiary out-of-pocket spending illustrate why the cost of prescription drugs is an ongoing concern for patients and public and private payers, and a pressing issue for policymakers.

Juliette Cubanski, Tricia Neuman, and Sarah True are with the Kaiser Family Foundation. Anthony Damico is an independent consultant.

Supported in part by Arnold Ventures.KFF retains complete control over all of its policy analysis content.

This 17th annual survey of the 50 states and the District of Columbia (DC) provides data on Medicaid and the Children’s Health Insurance Program (CHIP) eligibility, enrollment, renewal, and cost sharing policies as of January 2019. It is based on a telephone survey of state Medicaid and CHIP officials conducted by the Kaiser Family Foundation and the Georgetown University Center for Children and Families. Appendix Tables 1-20 include state data. The survey data over the past 17 years document how Medicaid has evolved from a program with limited eligibility and burdensome enrollment rules that excluded many low-income adults and created barriers to enrollment for eligible individuals to a modernized program that, with CHIP, provides a broad base of health coverage for the low-income population and more effectively and efficiently connects eligible individuals to coverage. Emerging policies to add Medicaid eligibility requirements could lead to coverage losses and increase the complexity of enrollment processes, eroding coverage gains and enrollment simplifications realized under the ACA.

Eligibility

Prior to the Affordable Care Act (ACA), many poor parents and other adults remained ineligible for Medicaid. Under previous rules, Medicaid eligibility was limited to certain groups of individuals with limited incomes. Eligibility for parents was very restricted and states could not receive federal Medicaid matching funds to cover other non-disabled adults. The ACA helped fill longstanding gaps in coverage by expanding Medicaid to adults with incomes up to 138% of the Federal Poverty Level (FPL) ($29,435 for a family of three or $17,236 for an individual as of 2019) and provided enhanced federal funding to states for expansion coverage.

Most states have expanded Medicaid to low-income adults under the ACA, and five additional states took steps forward with expansion in the past year. Virginia and Maine became the latest states to implement the Medicaid expansion as of January 2019, significantly increasing eligibility for parents and other adults (Figure 1). Voters in Idaho, Nebraska, and Utah passed ballot initiatives in 2018 to adopt the expansion, although it had not been implemented as of January 2019, and Utah and Idaho are seeking to add restrictions to the expansion. With this action, 37 states, including DC, had adopted the Medicaid expansion as of January 2019.

In the 14 states that had not yet adopted the Medicaid expansion as of January 2019, eligibility for parents and other adults remains very restrictive. The median eligibility level for parents in these states is 40% FPL ($8,532 per year for a family of three as of 2019) and other adults remain ineligible regardless of their income in all of these states, except Wisconsin. In these states, 2.5 million poor uninsured adults fall into a coverage gap, earning too much to qualify for Medicaid but not enough to qualify for subsidies to purchase insurance through the Marketplace, which become available at 100% FPL.¹ 

Medicaid and CHIP eligibility for children and pregnant women remains stable and robust. Eligibility levels for children and pregnant women are well above those for parents and other adults in almost all states. As of January 2019, 19 states, including DC, extend eligibility levels for children to 300% FPL or above (Figure 2), and nearly half of states provide eligibility to pregnant women above 200% FPL. The median income eligibility limit is 255% FPL ($54,392 per year for a family of three as of 2019) for children and 200% FPL ($42,660 for a family of three as of 2019) for pregnant women as of January 2019. The stability of children’s coverage reflected Congressional action in 2018 to continue CHIP funding through 2027 and retain the maintenance of effort (MOE) provision that preserves eligibility levels and enrollment procedures for children.

In 2018, additional states obtained Section 1115 waivers to add new eligibility requirements to their Medicaid programs. As of January 2019, 13 states had approved waivers allowing one or more eligibility requirements including conditioning eligibility on meeting a work requirement, adding completion of a health risk assessment as an eligibility requirement, charging premiums or monthly contributions, eliminating retroactive eligibility, delaying coverage until the first premium payment, and/or locking enrollees out of coverage for a period of time if they have unpaid premiums or do not complete timely renewals or report changes in circumstances.²  Many of these provisions require complex and costly administrative efforts that run counter to the streamlined enrollment processes under the ACA and lead to increased barriers to coverage and coverage losses among eligible individuals.

Enrollment and Renewal

Prior to the ACA, many states relied on paper-based, manual enrollment processes with burdensome requirements that could take days and weeks in some states. In addition to expanding Medicaid to adults, the ACA accelerated the adoption of new data-driven enrollment and renewal processes to connect individuals to coverage more quickly and conveniently and reduce the paperwork burden on states and individuals. These changes applied to all states regardless of whether they adopted the Medicaid expansion. The ACA also provided states enhanced federal funding for system upgrades to facilitate these improvements.

As of January 2019, many states provide a modernized, streamlined enrollment and renewal experience for individuals, reflecting the policies established by the ACA. With Tennessee rolling out a new eligibility system, individuals can apply online for Medicaid in all states for the first time as of January 2019 (Figure 3). Individuals can also apply by phone in the majority of states and, in many states, individuals can use a mobile device to apply or access an online account. Although online applications offer potential benefits to individuals and states, other application pathways, including in-person and mail, remain important, particularly for people with limited computer or internet access. Reflecting increased use of electronic data matches to verify eligibility criteria, the majority of states can complete real-time determinations (within 24 hours) (46 states) and automated renewals (46 states), with 16 states making at least half of determinations in real-time and 21 states completing at least half of renewals automatically. Reflecting these broad system and process changes, most states indicated improvements in one or more areas of eligibility operations compared to before the ACA.

Premiums and Cost-Sharing

Federal regulations establish parameters for premiums and cost sharing for Medicaid and CHIP enrollees that reflect their limited ability to pay health care costs. Given their modest incomes, research shows that premiums serve as a barrier to enrollment for low-income families and copayments can limit utilization of needed health care.³ 

Kentucky and New Mexico eliminated cost sharing for children during 2018; otherwise, premiums and cost sharing for children remained largely stable. This stability, in part, reflects that states generally cannot increase premiums for children under the MOE provision included in the CHIP funding extension through 2027.

Premiums remain limited among parents and other adults, although additional states received waiver approval to impose premiums or monthly contributions on these groups during 2018. Some states have obtained waiver approval to charge premiums or monthly contributions not otherwise allowed under federal rules. As of January 2019, five states (Arkansas, Iowa, Indiana, Michigan, and Montana) were charging premiums or monthly contributions for parents or other adults. Several additional states have received waiver approval for premiums or monthly contributions for adults, but they were not implemented as of January 2019. Some of these waivers also allow individuals to be locked out of coverage for a period of time if they are disenrolled due to non-payment and to delay coverage until after the first premium is paid. States can charge nominal cost sharing for adults in Medicaid under federal rules, and most states charge cost sharing for parents who were eligible for Medicaid through traditional pathways prior to the ACA and other adults.

Looking Ahead

Looking ahead, one key question is whether there will be continued advances to expand coverage and streamline enrollment processes or whether emerging policy changes will erode coverage gains and enrollment simplifications realized under the ACA.

Additional states may expand Medicaid, which would increase access to coverage for low-income adults and have positive effects on access to and use of care and state budgets and economies.⁴  However, if states attach waiver provisions such as work requirements or other restrictions to expansion, the positive reach and impact would be limited. Recently, some states have indicated interest in a partial expansion to an income level below 138% FPL with the ACA enhanced federal match rate.⁵  Relative to full expansion, partial expansions could limit coverage and potentially increase federal costs. While states can pursue waivers to extend coverage to a lower income level without access to the enhanced federal match, no waivers to allow an enhanced match for a partial expansion have been approved to date, and guidance from the previous administration prohibited use of the enhanced match for “partial expansions.”

Renewed CHIP funding protects children’s eligibility levels through 2027, but states that extend eligibility above 300% FPL will have the option to reduce eligibility starting in October 2019. When Congress continued funding for CHIP in 2018, it retained the MOE provision that requires states to preserve Medicaid and CHIP eligibility and enrollment policies for children. However, starting in October 2019, the MOE only applies to children’s coverage up to 300% FPL, meaning that states with eligibility limits above this level could reduce eligibility in the future. This change coincides with the beginning of the phase-out of the temporary 23-percentage point boost in federal CHIP matching rates, leaving states to resume paying a larger share of CHIP costs.

Emerging state and federal policies to add Medicaid eligibility requirements could erode the coverage gains and enrollment simplifications realized under the ACA. The Trump Administration is promoting new Medicaid eligibility requirements through waivers and its proposed budget and has approved a growing number of waiver requests from states, including work requirements, which have never previously been approved for the program. Some states are no longer moving forward with implementing waiver provisions following a change in leadership in the 2018 elections,^6 ,7  while other states are considering adding waiver provisions.^{8 ,9 ,10 ,11}  These types of requirements create barriers to coverage and increase administrative burdens and costs for states.^12 ,13  As such, they will likely dampen potential coverage gains and lead to coverage losses.

Other policy changes may lead to coverage losses among eligible low-income families and growing administrative burdens on states. In 2017, coverage gains stalled and began to reverse for the first time since implementation of the ACA, and Medicaid enrollment of adults and children declined in 2018.^14 ,15 ,16  Some of the decline in Medicaid enrollment could reflect the improving economy. However, some factors may be leading to a drop in enrollment among eligible individuals. While states’ growing use of technology and automation has led to improvements for individuals and states, there are concerns emerging in some states that eligible individuals may be losing coverage due to process-related issues.^17 ,18 ,19  Further, other policy changes outside of Medicaid could be dampening enrollment. For example, the Trump administration substantially decreased funding for outreach and enrollment assistance, which is pivotal for helping eligible individuals get and stay enrolled in coverage. In addition, shifting immigration policies, including a proposed rule to make changes to public charge policy, will likely lead to broad decreases in participation in Medicaid among legal immigrant families and their primarily U.S.-born children and increase administrative burdens on states.²⁰  Twenty states reported that they would need to change applications, forms, or other guidance, conduct additional staff training, and/or increase outreach and education to immigrant families if the public charge rule is finalized, while most of the remaining states indicated they could not yet determine how the rule would impact their operations.

This 17th annual survey of the 50 states and DC provides data on Medicaid and CHIP eligibility, enrollment, renewal, and cost sharing policies as of January 2019 and changes implemented in 2018. The report is based on a telephone survey of state Medicaid and CHIP program officials conducted by the Kaiser Family Foundation and the Georgetown University Center for Children and Families during January 2019. It includes findings in three key areas: Medicaid and CHIP Eligibility, Enrollment and Renewal Processes, and Premiums and Cost Sharing. State-specific information is available in Appendix Tables 1-20. The report includes policies for children, pregnant women, parents, and other adults under age 65 (who are determined eligible based on Modified Adjusted Gross Income (MAGI) financial eligibility rules); it does not include policies for groups eligible through Medicaid eligibility pathways for seniors and individuals eligible based on a disability (non-MAGI groups).

Evolution of Medicaid Eligibility and Enrollment

Medicaid has expanded over time to fill gaps in coverage and provide a broad base of coverage for the low-income population. Historically, Medicaid eligibility was tied to cash assistance and limited to low-income individuals in certain categories, including children, pregnant women, parents, seniors, and individuals with a disability. Over time, Congress gradually expanded Medicaid eligibility for children, and it was formally delinked from cash assistance in 1996. Following this delinking and the enactment of CHIP in 1997, many states continued to expand eligibility for children and pregnant women. Moreover, many states pursued innovative outreach and enrollment efforts to help mitigate coverage losses associated with delinking Medicaid from cash assistance and facilitate enrollment of eligible but uninsured children and pregnant women under the broader eligibility rules. However, eligibility for parents remained limited and other nondisabled adults were excluded from the program regardless of income. The ACA filled these coverage gaps by expanding Medicaid to low-income adults with incomes up to 138% FPL and providing enhanced federal funding to states for expansion coverage.

In addition, the Medicaid and CHIP enrollment and renewal experience has evolved from a paper-based, cumbersome process to a modernized, streamlined approach. Prior to the ACA, Medicaid enrollment processes in many states reflected the program’s historic ties to cash assistance. As of January 2013, over half of states imposed an asset test on parents, and some still required parents to complete a face-to-face interview at enrollment or renewal. Applications could only be completed by mail or in-person in a number of states and eligibility determinations could sometimes take days or weeks. The ACA accelerated the adoption of new data-driven enrollment and renewal processes that align and coordinate with the Marketplaces. These processes allow individuals to connect to coverage more quickly and conveniently and reduce the paperwork burden on states and individuals. The streamlined enrollment and renewal policies apply to all states regardless of whether they expanded Medicaid under the ACA. Many of the ACA policies built on innovations states implemented to facilitate enrollment when they expanded coverage for children following the enactment of CHIP. This previous state experience and research showed that complex enrollment processes with burdensome requirements create barriers for eligible individuals to obtain and maintain coverage and increase administrative burdens and costs for states.^21 ,22 

Eligibility as of January 2019

Under the ACA, most states have expanded Medicaid to low-income adults. As of January 2019, 34 states, including DC, had implemented the Medicaid expansion, extending eligibility to parents and other adults with incomes up to 138% FPL ($29,435 for a family of three or $17,236 for an individual as of 2019) (Figures 4 and 5). Connecticut and DC provide eligibility to higher levels. DC covers parents to 221% FPL and other adults to 215% FPL, and Connecticut restored parent eligibility to 155% FPL in 2018, after it had been reduced to 138% FPL in 2017.

There was an uptick in state action to expand in the past year, with five additional states taking steps forward. In January 2019, Maine and Virginia implemented the Medicaid expansion, significantly increasing eligibility for parents and other adults (Figure 6). Through ballot initiatives in November 2018, Idaho, Nebraska, and Utah voters adopted the expansion, although it had not yet been implemented as of January 2019, and Utah and Idaho are seeking to add restrictions to their expansions. With this state action, 37 states, including DC, had adopted the expansion as of January 2019.

In the 14 states that have not yet adopted or implemented the Medicaid expansion, eligibility levels remain limited to very low-income parents, and other adults are largely ineligible. In these states, the median eligibility level for parents was 40% FPL, or $8,532 for a family of three, with ten states limiting parent eligibility to less than half of the poverty level. Other adults remain ineligible for Medicaid regardless of their income in all of these states, except Wisconsin. Moreover, in 10 of these 14 states, the parent eligibility level has been eroding over time as a percent of the FPL (from 42% FPL to 39% FPL between January 2014 and January 2019), because it is tied to a static dollar threshold, while the FPL generally increases each year. This erosion further widens the disparity in coverage available for adults in expansion states versus those that have not yet adopted the expansion.

As of January 2019, eligibility levels for children were robust, with 49 states covering children with incomes above 200% FPL (Figure 7). Eligibility levels for children ranged from 175% FPL to 405% FPL across states, with a median level of 255% FPL. All states use CHIP funding to extend children’s coverage through a Medicaid expansion, a separate CHIP program, or a combination of both approaches. As of January 2019, 36 states had a separate CHIP program, which provides states additional flexibility with regard to benefits, premiums, and cost sharing. However, 16 of these states provide children in their separate CHIP program the full Early, Periodic, Screening, Diagnosis and Treatment Services (EPSDT) benefit that is the Medicaid benefit standard for children.

In 2018, Congress extended CHIP funding through 2027, which supports stable coverage for children. This action followed the longest funding lapse since the CHIP program was enacted in 1997, which had put continued coverage in jeopardy. The legislation retained the MOE provision requiring states to preserve children’s eligibility levels and enrollment policies. Starting in October 2019, however, the MOE will not apply to eligibility levels above 300% FPL.²³  At that time, states may continue covering children at these higher income levels and receive federal funding, but they would newly have the option to reduce eligibility to 300% FPL. This change in the MOE coincides with the beginning of a phase-out of the 23-percentage point temporary boost in federal CHIP matching rates. Also in 2018, Congress passed legislation requiring states to cover all former foster youth up to age 26 in Medicaid, regardless of where the youth was in foster care.²⁴  Previously, states were only required to cover those who had been in foster care within the state. This provision will become effective in 2023. In the interim, as of January 2019, 11 states have a waiver to cover former foster children regardless of whether they had been in care within the state, with Michigan discontinuing this coverage in 2018.

Almost half of states (22) report using CHIP funds to support a Health Services Initiative (HSI). Since the enactment of CHIP in 1997, states have had an option to utilize CHIP funds to support a state-designed HSI to improve the health of low-income children, as long as CHIP administrative costs combined with HSI services do not exceed 10% of total CHIP expenditures. HSIs must directly improve the health of low-income children who are eligible for CHIP and/or Medicaid but may serve children regardless of income. States reported a variety of purposes for their HSIs with the most common including supporting poison control systems, enhancing access to health services in schools, providing immunization services, and funding lead abatement efforts. Several states have enacted multiple initiatives through HSI funding with unique purposes ranging from supporting early reading programs in Oklahoma to providing respite care for children with developmental disabilities in New Jersey.

The median eligibility level for pregnant women remained steady at 200% FPL, with the upper eligibility limit ranging from 138% FPL to 380% FPL across states. The majority of states (47) provide Medicaid eligibility to pregnant women beyond the federal minimum of 138% FPL, and nearly half of states (22) extend eligibility to above 200% FPL (Figure 8). Five states use CHIP funds to cover pregnant women above Medicaid levels. In 46 states, pregnant women receive full Medicaid benefits (versus pregnancy-related services only), and all five states covering pregnant women with CHIP funds provide full CHIP benefits. All states are required to provide family planning services to individuals in Medicaid, while 28 states offer family planning services to individuals not otherwise eligible for Medicaid through a state option or waiver.²⁵  In 2018, Maryland expanded family planning eligibility to 264% FPL to match its eligibility level for pregnant women and extended eligibility to men while New Mexico added age restrictions to its coverage.

A total of 35 states have taken up the option to eliminate the five-year waiting period for Medicaid/CHIP coverage for lawfully-residing immigrant children and/or pregnant women (Figure 9). Lawfully residing immigrants may qualify for Medicaid and CHIP but are subject to eligibility restrictions. In general, they must have a “qualified” immigration status and many, including most lawful permanent residents or “green card” holders, must wait five years after obtaining qualified status before they may enroll.²⁶  States have an option to eliminate the five-year wait for lawfully residing immigrant children and pregnant women.²⁷  Half of states (24) apply the option to both children and pregnant women, while ten states use it for children only, and one state (Wyoming) uses it only for pregnant women. This count includes Nevada, which implemented the option for children in January 2019. Since 2002, states also have had the option to provide prenatal care to women regardless of immigration status by extending CHIP coverage to the unborn child, which 16 states provided as of January 2019. Undocumented immigrants are not eligible to enroll in Medicaid or CHIP, but some states have fully state-funded programs that cover certain groups of immigrants regardless of immigration status, including seven states that cover all income-eligible children.²⁸ 

Emerging Eligibility Restrictions in Section 1115 Waivers

In 2018, some states obtained Section 1115 waivers to add eligibility requirements to their Medicaid programs not otherwise allowed under federal rules. Many of these provisions are targeted to low-income adults made eligible by the ACA Medicaid expansion, although, in some states, they also affect poor parents and other traditional groups that existed prior to the ACA.^29 ,30 As of January 2019, 13 states had approved waivers that allow one or more eligibility requirements, including conditioning eligibility on meeting a work requirement, adding completion of a health risk assessment as an eligibility requirement, charging premiums or monthly contributions, eliminating retroactive eligibility, delaying coverage until the first premium payment, and/or locking enrollees out of coverage for a period of time if they have unpaid premiums or do not complete timely renewals or report changes in circumstances.³¹  However, many of these provisions had not yet been implemented as of January 2019.

These new eligibility requirements will increase barriers to coverage and contribute to coverage losses.^32 ,33  Under these new requirements, eligible people may lose coverage due to their inability to navigate more complicated enrollment processes and requirements, such as documenting work or a qualifying exemption.³⁴  Moreover, a large and longstanding body of research shows that premiums serve as an enrollment barrier among the low-income population.³⁵  As such, implementation of the eligibility restrictions will likely lead to reductions in Medicaid enrollment and erode coverage gains achieved under the ACA. For example, in Arkansas, the first state to implement a work requirement under a waiver, over 18,000 individuals lost coverage between September and December 2018 due to not meeting the work reporting requirements.³⁶  Additional research is needed to understand more about enrollees who lost coverage, but an early study found that many enrollees in Arkansas were unaware of or confused by the new requirements (despite outreach efforts) and faced multiple barriers complying with the work and reporting requirements that initially could only be reported online.³⁷ 

Recent waiver provisions also would make enrollment processes more complex and increase administrative burdens on states.³⁸  Implementing these types of eligibility provisions increases documentation requirements on individuals and states and can be administratively complex and costly. A number of states reported that implementing or preparing to implement these waivers increased administrative costs, staff time, the length of time to process renewals, and/or required changes to systems. For example, states implementing work requirements likely have to make system changes to reflect new eligibility rules; document compliance with new requirements; interface with other programs; implement coverage lockout periods; and exchange information among the state, enrollment broker, health plans, and providers. Additional staff may be required to educate enrollees, develop notices, evaluate and process exemptions, and review applications as churn increases and enrollees reapply or appeal coverage lockout periods.

Enrollment and Renewal Processes as of January 2019

The ACA accelerated the adoption of data-driven enrollment and renewal processes that align and coordinate with the Marketplaces. Prior years of the survey documented that states have made significant progress upgrading or building new systems and re-engineering their business processes to provide a more modernized and streamlined enrollment and renewal experience that increasingly relies on electronic data matches to verify eligibility criteria. As noted in last year’s report, continued advancement leveled off as these systems and processes matured, although states continued to implement targeted improvements and some states are still engaged in system upgrades. This year’s data shows continued progress in some areas, plans for continued improvements, and insight into how states’ current eligibility operations compare to prior to the ACA.

Eligibility Systems and Operations

Implementation of the ACA required states to change eligibility systems to implement new MAGI-based financial eligibility methodology for pregnant women, children, parents, and expansion adults and to apply streamlined eligibility and enrollment processes for MAGI groups that coordinate with the Marketplaces. To assist states with ACA implementation and accelerate the use of technology, the federal government increased the federal match available for states to implement new or upgraded systems to 90%.

States took varied approaches to implement system changes to reflect MAGI-based Medicaid and CHIP eligibility and enrollment processes. As of January 2019, most states had launched a new eligibility system or made a significant system upgrade, while others made only necessary adjustments to existing systems. Some states implemented new systems or major upgrades when the ACA was first implemented in 2014, while others have done so more recently. Some states are still implementing new systems or upgrades, either to replace older legacy systems or to build upon and continue to improve newer systems. Tennessee, which had relied solely on the Federally-facilitated Marketplace (FFM) to implement ACA policies, launched its new combined Medicaid and CHIP eligibility system on a pilot basis in select counties in 2018, with statewide expansion planned for early 2019.

In many states, these system upgrades and re-engineered processes have contributed to improvements in eligibility and enrollment operations compared to before the ACA. Most states (34 of 46 reporting states) reported improvement in at least one area of eligibility operations compared to prior to the ACA (Figure 10). Officials in some states described how new systems provided increased efficiency and accuracy and freed up eligibility workers to work on more complex cases. Some states reported no change in their operations compared to prior to the ACA. Only six states reported that one or more of these aspects of operations were worse, but a number of those states were in the process of implementing a new system, which is often associated with short-term challenges.

Applications, Online Accounts, and Mobile Access

With Tennessee’s launch of a new eligibility system and accompanying web-based application in 2018, individuals can apply online for Medicaid in every state as of January 2019.³⁹  In contrast, online applications were only available in 36 states in January 2013, the year prior to the implementation of the ACA coverage provisions (Figure 11). In 38 states, individuals can complete the online application using a mobile device, and 20 states have made the online application mobile-friendly and/or developed a mobile “app” for the application. In 2018, Indiana and Tennessee developed the capacity for individuals to apply using a mobile device, New Hampshire and Nevada added a mobile-friendly design to their application, and Wisconsin launched a mobile “app” for its online application. Additional states plan to enhance mobile functionality in 2019 or later. All states also offer the ability for individuals to apply via telephone, but four states have not enabled telephonic signatures and require a follow-up paper form or electronic signature to complete the application. The broad availability of telephone applications also represents a significant increase compared to prior to the ACA, when telephone applications were accepted in only 17 states.

All states have designed their online applications so that individuals may start, stop, and return to the application (Figure 12). In addition, two-thirds of states (35) provide the option for individuals to scan and upload documents that may be needed to verify eligibility, and 27 states have separate portals for application assisters to submit facilitated applications. In 32 states, all Medicaid eligibility groups (children, pregnant women, adults, seniors, and individuals eligible based on a disability) can apply through a combined online application. Half of the states (25) offer a multi-benefit online application that also allows individuals to apply for at least one non-health program such as the Supplemental Nutrition Assistance Program (SNAP), Temporary Assistance for Needy Families (TANF), or child care assistance. These combined applications can facilitate individuals’ access to a broader array of services, but also may increase the length and complexity of the application.

Although online applications offer potential benefits to individuals and states, other application pathways remain important. Online applications can make applying for coverage more convenient and accessible for some individuals, and can facilitate faster processing of determinations, limit data entry errors, and reduce state administrative burdens. However, other application pathways remain important for individuals who may not have easy access to a computer or the internet or who feel more comfortable applying in-person or through a paper form. Among the 40 states able to report data on modes of application, the median share of applications received online was 50%. The remaining half came via phone, in-person, or mail, although the share of telephone applications was very small in many states. Of these 40 states, 20 reported receiving half or more of applications online, including 7 states that reported receiving at least 75% of applications online (Figure 13). However, the share varied widely across states, ranging from 4% in Mississippi to 90% or higher in Florida, New York and Texas.

States continued to advance the use of electronic accounts for enrollees to review or submit information. Online accounts add convenience for enrollees to access and update their information and efficiencies for states by eliminating the need for caseworkers to manually enter information like address changes. With New Jersey and Tennessee implementing electronic accounts, 42 states provided electronic accounts as of January 2019. During 2018, states also continued to expand the functions and features of existing accounts. As of January 2019, most states offer a broad array of functions through their accounts (Figure 14). In 33 of the 42 states with an electronic account, enrollees can access the account through a mobile device. Additionally, 21 states indicate that the online account has been designed with mobile-friendly formatting and six report that they have created a mobile “app” through which individuals can access their account. Several states reported plans to enhance mobile access to online accounts during or after 2019.

Eligibility Determinations

With new or upgraded eligibility systems, states are increasingly able to make real-time eligibility determinations (within 24 hours) by using electronic data matches to verify eligibility criteria. As of January 2019, 46 states are able to make real-time eligibility determinations. However, the share of determinations completed in real-time varies widely across states. A total of 16 states report conducting at least half of MAGI-based determinations in real-time, including 9 states which make three-quarters or more of determinations in under 24 hours (Figure 15). States processing the majority of their applications in real-time are more likely to report that most are made by the eligibility system automatically without caseworker action, while those processing a lower share in real-time are more likely to require caseworker interaction to complete the determination. Automated determinations are more efficient and can reduce data entry errors and administrative burden, but systems and links to trusted data sources must be well-tested and subject to ongoing quality assurance to ensure accuracy.

The majority of states do not report any problems or delays in their eligibility determinations. However, ten states indicated problems or delays as of January 2019. About half of these states are continuing to make changes to systems and processes, which may be contributing to these challenges. Other reasons for backlogs include gaps in staffing and resources or increased volume of applications resulting from recent implementation of the Medicaid expansion.

All states verify citizenship or qualified immigration status, as well as income, when determining eligibility for Medicaid and CHIP. States are able to electronically verify citizenship or immigration status either directly with the Social Security Administration or Department of Homeland Security or through the federal data services hub that consolidates access to these sources. These verifications must be conducted prior to determining eligibility, however, individuals who attest to a qualified status must be given a reasonable amount of time to provide documentation if eligibility cannot be confirmed electronically. While states must also verify income, they have the option to do so prior to enrollment, which 45 states do, or to enroll based on the applicant’s reported income and verify post-enrollment. Verification policies for other eligibility criteria, including age/date of birth, state residency, and household size, vary across states, reflecting state options to verify this information before or after enrollment or to accept the individual’s self-attestation.

Just over half of states (28) report that they conduct data matches on a periodic basis to identify changes in circumstances between annual redetermination periods. States may disenroll individuals if these data checks reveal changes in income or other information that affect eligibility and the individual is unable to resolve the discrepancy within specified timeframes (often within ten days from the date of the notice). These data checks can lead to coverage losses among eligible individuals if they do not receive the notice or are not able to provide documentation within the required timeframe. States vary in the frequency of these checks. For example, some conduct them quarterly, while others conduct only one check between annual renewals. In 2018, Minnesota and Tennessee implemented routine data checks to verify eligibility. Several additional states have recently passed legislation or are considering legislation to require stricter and more frequent data checks.^40 ,41 

The need for presumptive eligibility has decreased as states are increasingly able to process determinations quickly, but it remains an avenue in some states for people to access temporary coverage when they are unable to receive a real-time determination. Presumptive eligibility is a long-standing policy option that allows states to train and authorize qualified entities such as federally qualified health centers or prenatal clinics to make a temporary eligibility determination so that individuals can quickly access temporary coverage while their final eligibility determination is processed. The ACA expanded the use of presumptive eligibility to allow hospitals in all states to presumptively enroll MAGI-based groups including parents and expansion adults, although Arkansas obtained an exemption from this requirement through a Section 1115 waiver. As of January 2019, 30 states use presumptive eligibility for pregnant women and 20 states have adopted the policy for children. Fifteen states also have extended the policy to parents, adults, family planning services, and/or former foster youth.

System Integration

States continue to reintegrate Medicaid eligibility determinations for seniors, individuals eligible based on a disability, and non-health programs into their upgraded Medicaid systems. Prior to the ACA, state systems generally determined eligibility for all Medicaid groups and most included non-health programs, such as TANF and SNAP.⁴²  The ACA required states to use new financial eligibility rules and streamlined enrollment policies for MAGI-based groups. However, states continue to apply their pre-ACA financial eligibility rules to non-MAGI groups (seniors and individuals eligible based on a disability). As a result, some states separated MAGI eligibility determinations from non-MAGI groups and non-health programs when they implemented the ACA. As their new systems have matured, states have increasingly reintegrated non-MAGI groups and non-health programs into the upgraded systems. This trend continued in 2018, with Iowa and Tennessee integrating non-MAGI groups into their systems. As of January 2019, 32 states determine eligibility for all Medicaid groups through a single system, and, in 24 states, the MAGI-based Medicaid eligibility system determines eligibility for at least one non-health program. This integration can facilitate access to services for individuals and offer efficiencies to states but requires more complex system implementation. States also have realized progress integrating Medicaid and CHIP eligibility determinations. Prior to the ACA, less than half of states with separate CHIP programs (16 of 38) used a single system for Medicaid and CHIP, but, as of January 2019, all but 1 of the 36 states with separate CHIP programs determine eligibility through a single system. Looking ahead, states remain focused on reintegration with nearly half indicating plans to integrate non-MAGI groups and/or additional non-health programs into their MAGI-based system in 2019 or beyond.

All states coordinate Medicaid and Marketplace coverage, as required under the ACA. However, how states coordinate this coverage depends on the structure of its Marketplace. Most states (39) rely on the Federally Facilitated Marketplace (FFM) system, known as Healthcare.gov, for Marketplace eligibility determinations and enrollment. These states must electronically transfer data back and forth with the FFM to coordinate Medicaid and Marketplace coverage. States report that these transfers generally are going smoothly without any significant delays or problems. Of the 39 states relying on the FFM platform, 30 states use the FFM only to assess Medicaid eligibility, and then make a final determination after the case is transferred to the state. In 2018, Arkansas shifted to receiving assessments from the FFM. Nine states allow the FFM to make final Medicaid or CHIP determinations, including Virginia, which switched from an assessment to a determination state in 2018 to facilitate its implementation of the Medicaid adult expansion. In the remaining 12 states that use their own State-based Marketplace system, Medicaid, CHIP, and Marketplace determinations are conducted through a single integrated system (Figure 16).

Renewals

Streamlined renewal policies can facilitate continuous coverage among eligible individuals, which helps prevent gaps in care and protects individuals from medical costs that might occur if they experience breaks in coverage. Under ACA policies, states are required to use available data to determine ongoing eligibility before requesting the enrollee to complete a renewal form or provide documentation. If a state is unable to determine ongoing eligibility based on available data, it may then request additional information from the individual and must provide the individual multiple avenues to renew, including online, by phone, in-person, or via mail. The move to automatic renewals can help reduce “churn” or short gaps in coverage, contribute to efficiencies and cost savings, and reduce data entry errors and administrative burden. However, eligible individuals may remain at risk for losing coverage at renewal if the state is unable to determine ongoing eligibility based on available data and they do not receive or understand notices or forms requesting additional information and respond to requests within required timeframes, which are often limited to 10 days.

As of January 2019, 46 states were completing automatic or “ex parte” renewals, through which the state renews coverage based on available eligibility-related data. Among the 43 states able to report the share of renewals completed through automated processes, 21 states reported at least half of MAGI renewals are conducted automatically, including 10 states that complete three-quarters or more of renewals automatically (Figure 17). States with a high share of automatic renewals are more likely to have a system that can complete the renewals without requiring caseworker action. Conversely, states that rely on manual action by a caseworker—for example, to look up data to verify ongoing eligibility—generally report a smaller share of renewals completed automatically.

When unable to renew coverage based on available data, 46 states send pre-populated forms to enrollees to facilitate the renewal process (Figure 18). This count includes Tennessee and Vermont which began sending pre-populated forms in 2018. Idaho stopped mailing pre-populated forms in 2018, and like Florida and Oklahoma, sends a notice to the individual requesting that they log into their online account or call to confirm their information and/or report any changes. Most states (41), allow individuals to renew by phone; and four additional states allow individuals to complete most of the renewal process by phone, but still require a paper form or electronic signature to complete the process.

As of January 2019, the majority of states were up-to-date in processing Medicaid and CHIP renewals. However, ten states reported delays with most of these states overlapping with the ten states that reported delays in application processing. Causes of renewal delays were similar to those contributing to backlogs in eligibility determinations, including issues related to system upgrades or challenges related to staffing and volume of renewals.

Nearly two-thirds of the states (32) minimize gaps in coverage for children by providing 12-month continuous eligibility in either Medicaid and/or CHIP. All states are required to renew coverage every 12 months for children, pregnant women, parents and expansion adults. However, during that 12-month period, individuals may lose coverage if they experience a change in circumstance that makes them ineligible, such as an increase in income. For children, states can opt to provide 12-month continuous eligibility, which allows a child to remain enrolled for a full year unless the child ages out of coverage, moves out of state, voluntarily withdraws, or does not make required premium payments. Continuous eligibility promotes stable access to care by reducing “churn” or individuals moving on and off coverage due to modest, and often temporary, changes in circumstances such as overtime or extra seasonal work. Continuous eligibility also facilitates a more accurate assessment of the quality of health care children receive in Medicaid and CHIP because most quality measures require minimum periods of enrollment. As of January 2019, 24 states have adopted continuous eligibility for children in Medicaid and CHIP, and eight additional states have implemented the policy only in their separate CHIP programs. Montana and New York also provide 12-month continuous coverage for adults through a Section 1115 waiver.

Research shows that premiums serve as a barrier to enrollment for low-income families and copayments can limit utilization of needed health care.⁴³  Federal regulations establish parameters for premiums and cost sharing for Medicaid and CHIP enrollees that reflect their limited ability to pay out-of-pocket health care costs due to their modest incomes. Under these rules, states may not charge premiums in Medicaid for enrollees with incomes less than 150% FPL. However, some states have obtained waivers to impose charges in Medicaid that are not otherwise allowed. Maximum allowable cost sharing varies by type of service and income in Medicaid (Table 1). CHIP programs have more flexibility in regard to premiums and cost sharing, but both Medicaid and CHIP limit total family out-of-pocket costs to no more than 5% of family income.

Premiums and Cost Sharing for Children

The number of states (30) charging premiums or enrollment fees to children in Medicaid/CHIP held steady in 2018 (Figure 19). The stability of premiums, in part, reflects that the extension of CHIP funding also extended the MOE provision for children’s eligibility and enrollment policies. Under the MOE, states may not implement new premiums or increase premiums outside of routine increases that were approved in the state’s plan as of 2010. Premiums and cost sharing are much more prevalent in CHIP than Medicaid, reflecting that the program covers families with more moderate income levels. Only four states charge premiums for children in Medicaid. These premiums are limited to children in CHIP-funded Medicaid expansions and the lowest income level at which they are charged is 160% FPL. Among the 36 separate CHIP programs, four charge annual enrollment fees and 22 impose monthly or quarterly premiums for children; the lowest income at which these charges begin is 133% FPL.

States vary in disenrollment policies related to non-payment of premiums within federal rules designed to minimize gaps in coverage for children. The minimum grace period before canceling coverage for non-payment of premiums is 60 days in Medicaid and 30 days in CHIP. However, 16 of the 22 states charging monthly or quarterly premiums in CHIP provide at least a 60 day grace period. Children who are disenrolled from Medicaid for non-payment of premiums cannot be locked-out of coverage for a period of time as a penalty for non-payment, while separate CHIP programs may establish a lockout period of up to 90 days. Among the 22 states charging monthly or quarterly premiums in CHIP, eight states do not impose lockout periods, including Georgia, which eliminated the practice in 2018. As of January 2019, 14 states maintain lockout periods in CHIP ranging from 1 month to 90 days.

As of January 2019, less than half of the states (23) charge copayments to children in Medicaid and CHIP after Kentucky and New Mexico eliminated children’s copayments. In 2018, New Mexico eliminated its copayments for children, leaving only two states (Tennessee and Wisconsin) that require copayments for children in Medicaid. Kentucky also eliminated copayments for children in its separate CHIP program in 2018, reducing the number of states that impose copayments on children to 23 of 36 states with separate CHIP programs (Figure 20). Only one state (Tennessee) imposes cost sharing below 133% FPL due to long-standing waiver authority. Cost sharing varies by state and service. At 151% FPL, 18 states charge cost sharing for non-preventive physician visits, 14 states charge for an inpatient hospital visit, and 14 charge for generic drugs.

Premiums and Cost Sharing for Parents and Other Adults

Some states have obtained waivers to charge premiums or monthly contributions for adults in Medicaid that would not otherwise be allowed under federal rules. As of January 2019, five states (Arkansas, Indiana, Iowa, Michigan, and Montana) have implemented premiums or monthly contributions for expansion adults, and, in Indiana, the charges also apply to parents. In 2018, Indiana used waiver authority to add a tobacco surcharge of 50% of the normal monthly contribution if the enrollee has been a tobacco user for the past year. Some of these waivers also allow individuals to be locked out of coverage for a period of time if they are disenrolled due to non-payment and to delay coverage until after the first premium is paid. An additional four states (Arizona, Kentucky, New Mexico, and Wisconsin) have obtained waiver approval to charge premiums or monthly contributions to adults and, in some cases, impose lockout periods or delay coverage, but they were not yet implemented as of January 2019. New Mexico is no longer planning to implement the premiums following a change in state leadership and implementation was on hold in Arizona and Wisconsin, while Kentucky is in the process of preparing for implementation.

As of January 2019, most states charge cost sharing for parents and other adults. A total of 39 states charge copayments for parents eligible for Medicaid under traditional pathways that existed before the ACA (Figure 21). In addition, of the 35 states that cover other adults (including the 34 states that have implemented the ACA Medicaid expansion and Wisconsin, which covers other adults but has not adopted the expansion), 25 charge copayments. The number of states charging copayments to traditional parents has remained generally consistent for several years. Although many states impose the charges on all adult beneficiaries, regardless of income, cost sharing amounts in Medicaid are limited by federal law. Two states made minor adjustments to copayments in 2018, including New Hampshire, which lowered cost sharing amounts for expansion adults to match levels charged for 1931 parents, and Indiana which dropped its copayment of subsequent non-emergency use of the emergency room from $25 to $8.

Looking ahead, one key question is whether there will be continued advances to expand coverage and streamline enrollment processes or whether emerging policy changes will erode coverage gains and enrollment simplifications realized under the ACA.

Additional states may expand Medicaid, which would increase access to coverage for low-income adults and have positive effects on care and state budgets and economies.⁴⁴  Several new governors who were elected in 2018 ran on platforms to expand Medicaid. Further, the success of recent ballot initiatives to expand could spark similar action in other states. However, voter-approved ballot measures may face barriers to implementation based on state law requirements, efforts to block or amend the policies by legislators or governors, or legal challenges.⁴⁵  Ongoing litigation related to the constitutionality of the ACA also could influence state decisions to expand. However, if states attach waiver provisions such as work requirements or other restrictions to expansion, the positive reach and impact would be limited. Recently, some states have indicated interest in a partial expansion to an income level below 138% FPL with the ACA enhanced federal match rate.⁴⁶  Relative to full expansion, partial expansions could limit coverage and potentially increase federal costs. While states can pursue waivers to extend coverage to a lower income level without access to the enhanced federal match, no waivers to allow an enhanced match for a partial expansion have been approved to date, and guidance from the previous administration prohibited the use of the enhanced match for “partial expansions.”

Renewed CHIP funding protects children’s eligibility levels through 2027, but states that extend eligibility above 300% FPL will have the option to reduce eligibility starting in October 2019. When Congress continued funding for CHIP in 2018, it retained the MOE provision that requires states to preserve Medicaid and CHIP eligibility and enrollment policies for children. However, starting in October 2019, the MOE only applies to children’s coverage up to 300% FPL. At that time, states can maintain coverage for children above this income level and still receive federal matching funds, but will newly have the option to reduce eligibility to 300% FPL. This change in the scope of the MOE coincides with the beginning of the phase-out of the 23-percentage point temporary boost in federal CHIP matching rates available between 2016 and 2019. This boost will be reduced by half (11.5 percentage points) in 2020 and then rates revert to the traditional enhanced CHIP match rate in 2021, leaving states to resume paying a larger share of CHIP costs.

Emerging state and federal policies to add Medicaid eligibility requirements could erode the coverage gains and enrollment simplifications realized under the ACA. The Trump Administration is promoting new Medicaid eligibility requirements through waivers and its proposed budget and has approved a growing number of waiver requests from states, including work requirements, which have never previously been approved for the program. Some states are no longer moving forward with implementing waiver provisions following a change in leadership in the 2018 elections,^47 ,48  while other states are considering adding waiver provisions.^{49 ,50 ,51 ,52}  Research shows that these types of requirements create barriers for eligible individuals to obtain and maintain coverage and increase administrative burdens and costs for states.^53 ,54  As such, they will likely dampen potential coverage gains and lead to coverage losses that would erode the coverage increases realized under the ACA. States’ implementation of waiver provisions could be affected by ongoing legal challenges to the Administration’s authority to approve work requirements and other restrictive measures in Arkansas and Kentucky.

Other policy changes may lead to coverage losses among eligible low-income families and growing burdens on states. In 2017, coverage gains stalled and began to reverse for the first time since the implementation of the ACA and Medicaid enrollment of adults and children declined in 2018.^55 ,56 ,57  Some of the decline in Medicaid enrollment could reflect the improving economy. However, some factors may be leading to enrollment declines among eligible individuals. While states’ growing use of technology and automation has led to improvements for individuals and states, there are concerns emerging in some states that eligible individuals may be losing coverage due to process-related issues.^58 ,59 ,60  Further, other policy changes outside of Medicaid could be dampening enrollment. For example, the Trump administration substantially decreased funding for outreach and enrollment assistance, which is pivotal for helping eligible individuals get and stay enrolled in coverage. In addition, shifting immigration policies, including the proposed rule to make changes to public charge policy, will likely lead to broad decreases in participation in Medicaid among legal immigrant families and their primarily U.S.-born children and increase administrative burdens on states.⁶¹  Twenty states reported they would need to change applications, forms, or other guidance, conduct additional staff training, and/or increase outreach and education to immigrant families if the public charge rule is finalized, while most of the remaining states indicated they could not yet determine how the rule would impact their operations.

Trend and State-by-State Tables

Table A:Trends in State Medicaid and CHIP Eligibility, Enrollment, and Renewal Policies, July 2000 – January 2019

Table 1:  Income Eligibility Limits for Children’s Health Coverage as a Percent of the Federal Poverty Level, January 2019

Table 2: Waiting Period for CHIP Enrollment, January 2019

Table 3:  State Adoption of Optional Medicaid and CHIP Coverage for Children, January 2019

Table 4: Medicaid and CHIP Coverage for Pregnant Women and Medicaid Family Planning Expansion Programs, January 2019

Table 5:  Medicaid Income Eligibility Limits for Adults as a Percent of the Federal Poverty Level, January 2019

Table 6:  Online and Telephone Medicaid Applications for Children, Pregnant Women, Parents, and Expansion Adults, January 2019

Table 7:  Functions of Online Medicaid Applications for Children, Pregnant Women, Parents, and Expansion Adults, January 2019

Table 8:  Features of Online Medicaid Accounts, January 2019

Table 9:  Mobile Access to Online Medicaid Applications and Accounts, January 2019

Table 10:  Medicaid Eligibility Systems for Children, Pregnant Women, Parents, and Expansion Adults, January 2019

Table 11:  Coordination between Medicaid and Other Systems, January 2019

Table 12:  Presumptive Eligibility in Medicaid and CHIP, January 2019

Table 13:  Medicaid Renewal Processes for Children, Pregnant Women, Parents, and Expansion Adults, January 2019

Table 14:  Premium, Enrollment Fee, and Cost Sharing Requirements for Children, January 2019

Table 15:  Premiums and Enrollment Fees for Children at Selected Income Levels, January 2019

Table 16:  Disenrollment Policies for Non-Payment of Premiums in Children’s Coverage, January 2019

Table 17:  Cost Sharing Amounts for Selected Services for Children at Selected Income Levels, January 2019

Table 18:  Cost Sharing Amounts for Prescription Drugs for Children at Selected Income Levels, January 2019

Table 19:  Premium and Cost Sharing Requirements for Selected Services for Section 1931 Parents, January 2019

Table 20:  Premium and Cost Sharing Requirements for Selected Services for Medicaid Adults, January 2019

1. Kaiser Family Foundation, Distribution of Eligibility for ACA Health Coverage Among those Remaining Uninsured as of 2017 (Washington, DC: Kaiser Family Foundation, December 2018), https://modern.kff.org/health-reform/state-indicator/distribution-of-eligibility-for-aca-coverage-among-the-remaining-uninsured/ ↩︎
2. Kaiser Family Foundation, Medicaid Waiver Tracker: Approved and Pending Section 1115 Waivers by State (Washington, DC: Kaiser Family Foundation, March 2019), https://modern.kff.org/medicaid/issue-brief/medicaid-waiver-tracker-approved-and-pending-section-1115-waivers-by-state/#Table3 ↩︎
3. Samantha Artiga, Petry Ubri, and Julia Zur, The Effects of Premiums and Cost Sharing on Low-Income Populations: Updated Review of Research Findings ((Washington, DC: Kaiser Family Foundation, June 2017), https://modern.kff.org/medicaid/issue-brief/the-effects-of-premiums-and-cost-sharing-on-low-income-populations-updated-review-of-research-findings/ ↩︎
4. Larisa Antonisse, Rachel Garfield, Robin Rudowitz, and Samantha Artiga, The Effects of Medicaid Expansion under the ACA: Updated Findings from a Literature Review, (Washington, DC: Kaiser Family Foundation, March 2018), https://modern.kff.org/medicaid/issue-brief/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review-march-2018/         ↩︎
5. Robin Rudowitz and MaryBeth Musumeci, “Partial Medicaid Expansion” with ACA Enhanced Matching Funds: Implications for Financing and Coverage, (Washington, DC: Kaiser Family Foundation, February 2019), https://modern.kff.org/medicaid/issue-brief/partial-medicaid-expansion-with-aca-enhanced-matching-funds-implications-for-financing-and-coverage/ ↩︎
6. Governor Janet Mills, Letter to CMS Administrator Seema Verma, January 22, 2019, https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/me/mainecare/me-mainecare-approval-reponse-ltr-01222019.pdf ↩︎
7. Office of Governor Michelle Lujan Grisham, “Gov. Lujan Grisham Announces Plan to Reverse Medicaid Policies that Create Barriers to Accessing Coverage,” (Office of Governor Michelle Lujan Grisham, Press Release, February 13, 2019), https://www.governor.state.nm.us/2019/02/13/gov-lujan-grisham-announces-plan-to-reverse-medicaid-policies-that-create-barriers-to-accessing-coverage/ ↩︎
8. South Carolina Department of Health and Human Services, “Community Engagement Section 1115 Waiver Application,” South Carolina Department of Health and Human Services (March 4, 2019), https://www.scdhhs.gov/public-notice/community-engagement-section-1115-demonstration-waiver-application-0 ↩︎
9. The Alaska State Legislature, SB 7, 31st Legislature (2019-2020), accessed March 11, 2019, http://www.akleg.gov/basis/Bill/Detail/31?Root=sb%207 ↩︎
10. The Iowa Legislature, Senate File 538, 88th General Assembly, accessed March 11, 2019, https://www.legis.iowa.gov/legislation/BillBook?ba=SF%20538&ga=88 ↩︎
11. The Montana Legislature, HB 658, 66th Legislature, accessed March 25, 2019, http://laws.leg.mt.gov/legprd/LAW0210W$BSIV.ActionQuery?P_BILL_NO1=658&P_BLTP_BILL_TYP_CD=HB&Z_ACTION=Find&P_SESS=20191 ↩︎
12. Rachel Garfield, Robin Rudowitz, and MaryBeth Musumeci, Implications of a Medicaid Work Requirement: National Estimates of Potential Coverage Losses Appendix, (Washington, DC: Kaiser Family Foundation, June 2018), https://modern.kff.org/report-section/implications-of-a-medicaid-work-requirement-national-estimates-of-potential-coverage-losses-appendix/ ↩︎
13. Kaiser Family Foundation, Implications of Emerging Waivers on Streamlined Medicaid Enrollment and Renewal Processes, (Washington, DC: Kaiser Family Foundation, February 2018), https://modern.kff.org/medicaid/fact-sheet/implications-of-emerging-waivers-on-streamlined-medicaid-enrollment-and-renewal-processes/ ↩︎
14. Rachel Garfield, Kendal Orgera, and Anthony Damico, The Uninsured and the ACA: A Primer – Key Facts about Health Insurance and the Uninsured amidst Changes to the Affordable Care Act, (Washington, DC: Kaiser Family Foundation, January 2019), https://modern.kff.org/uninsured/report/the-uninsured-and-the-aca-a-primer-key-facts-about-health-insurance-and-the-uninsured-amidst-changes-to-the-affordable-care-act/ ↩︎
15. Centers for Medicare and Medicaid Services, “Medicaid & CHIP Monthly Applications, Eligibility Determinations, and Enrollment Reports: January 2014 – December 2018 (preliminary)”, Centers for Medicare and Medicaid Services, (February 28, 2019), https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/monthly-reports/index.html ↩︎
16. Tricia Brooks, Child Enrollment in Medicaid and CHIP Down 600k Children in 2018, (Washington, DC: Georgetown University Center for Children and Families, March 2019), https://ccf.georgetown.edu/2019/03/02/child-enrollment-in-medicaid-and-chip-took-another-hit-in-november-down-600k-children-in-2018/ ↩︎
17. Phil Galewitz, “Missouri’s shrinking Medicaid rolls raise red flag on vetting process,” Kaiser Health News, (February 11, 2019), https://www.stltoday.com/news/local/govt-and-politics/missouri-is-pushing-eligible-people-off-medicaid-including-thousands-of/article_c4bbec5b-26e5-55a6-936a-8904224dbfa7.html? ↩︎
18. 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, (Washington, DC: Kaiser Family Foundation, 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/ ↩︎
19. Michael Ollove,”Child Enrollment in Public Health Programs Fell by 600K Last Year,” Governing, (March 8, 2019),   http://www.governing.com/topics/health-human-services/sl-chip-medicaid-children-enrollment.html ↩︎
20. Samantha Artiga, Rachel Garfield, and Anthony Damico, Estimated Impacts of the Proposed Public Charge Rule on Immigrants and Medicaid, (Washington, DC: Kaiser Family Foundation, October 2018), https://modern.kff.org/disparities-policy/issue-brief/estimated-impacts-of-the-proposed-public-charge-rule-on-immigrants-and-medicaid/. ↩︎
21. Rachel Garfield, Robin Rudowitz, and MaryBeth Musumeci, Implications of a Medicaid Work Requirement: National Estimates of Potential Coverage Losses Appendix, (Washington, DC: Kaiser Family Foundation, June 2018), https://modern.kff.org/report-section/implications-of-a-medicaid-work-requirement-national-estimates-of-potential-coverage-losses-appendix/ ↩︎
22. Kaiser Family Foundation, Implications of Emerging Waivers on Streamlined Medicaid Enrollment and Renewal Processes, (Washington, DC: Kaiser Family Foundation, February 2018), https://modern.kff.org/medicaid/fact-sheet/implications-of-emerging-waivers-on-streamlined-medicaid-enrollment-and-renewal-processes/ ↩︎
23. 305% FPL with the five percentage point income disregard that is applied to MAGI-based groups. ↩︎
24. U.S. Congress. House. Substance Use-Disorder Prevention that Promotes Opioid Recovery and Treatment (SUPPORT) for Patients and Communities Act of 2018. HR 6, 115th Congress. Introduced in House June 13, 2018. https://www.congress.gov/bill/115th-congress/house-bill/6 ↩︎
25. Some states also have state-funded family planning programs. ↩︎
26. Some immigrants with qualified status, such as refugees and asylees, do not have to wait five years before enrolling. Some immigrants, such as those with temporary protected status, are lawfully present but do not have a qualified status and are not eligible to enroll in Medicaid or CHIP regardless of their length of time in the country ↩︎
27. This option also extends coverage to lawfully present immigrants without a qualified status. ↩︎
28. The District of Columbia, Illinois, Massachusetts, New York, Oregon and Washington use state funds to cover income-eligible children regardless of immigration status. In addition, some states use state funds to cover adult immigrants, but the coverage is often limited to targeted groups. ↩︎
29. Elizabeth Hinton, MaryBeth Musumeci, Robin Rudowitz, Larisa Antonisse, Cornelia Hall, Section 1115 Medicaid Demonstration Waivers: The Current Landscape of Approved and Pending Waivers (Washington, DC: Kaiser Family Foundation, February 2019), https://modern.kff.org/medicaid/issue-brief/section-1115-medicaid-demonstration-waivers-the-current-landscape-of-approved-and-pending-waivers/ ↩︎
30. Kaiser Family Foundation, Medicaid Waiver Tracker: Approved and Pending Section 1115 Waivers by State (Washington, DC: Kaiser Family Foundation, March 2019), https://modern.kff.org/medicaid/issue-brief/medicaid-waiver-tracker-approved-and-pending-section-1115-waivers-by-state/#Table5 ↩︎
31. This count excludes Maine, which rejected previously approved waiver terms and conditions in January 2019. Six states (DE, MA, MD, RI, TN, and UT) have retroactive coverage waivers that are not included in this count because they pre-date the ACA and may have been associated with achieving the budgetary savings necessary to expand coverage before federal law authorized the use of Medicaid funds for childless adults. ↩︎
32. Rachel Garfield, Robin Rudowitz, and MaryBeth Musumeci, Implications of a Medicaid Work Requirement: National Estimates of Potential Coverage Losses (Washington, DC: Kaiser Family Foundation, June 2018), https://modern.kff.org/medicaid/issue-brief/implications-of-a-medicaid-work-requirement-national-estimates-of-potential-coverage-losses/ ↩︎
33. Rachel Garfield, Robin Rudowitz, MaryBeth Musumeci, and Anthony Damico, Implications of Work Requirements in Medicaid: What Does The Data Say? (Washington, DC: Kaiser Family Foundation, June 2018), https://modern.kff.org/medicaid/issue-brief/implications-of-work-requirements-in-medicaid-what-does-the-data-say/ ↩︎
34. MaryBeth Musumeci, Robin Rudowitz, and Barbara Lyons, Medicaid Work Requirements in Arkansas: Experience and Perspectives of Enrollees (Washington, DC: Kaiser Family Foundation, December 2018), https://modern.kff.org/medicaid/issue-brief/medicaid-work-requirements-in-arkansas-experience-and-perspectives-of-enrollees/ ↩︎
35. Samantha Artiga, Petry Ubri, and Julia Zur, The Effects of Premiums and Cost Sharing on Low-Income Populations: Updated Review of Research Findings ((Washington, DC: Kaiser Family Foundation, June 2017), https://modern.kff.org/medicaid/issue-brief/the-effects-of-premiums-and-cost-sharing-on-low-income-populations-updated-review-of-research-findings/ ↩︎
36. Robin Rudowitz, MaryBeth Musumeci, and Cornelia Hall, January State Data for Medicaid Work Requirements in Arkansas (Washington, DC: Kaiser Family Foundation, February 2019), https://modern.kff.org/medicaid/issue-brief/state-data-for-medicaid-work-requirements-in-arkansas/ ↩︎
37. MaryBeth Musumeci, Robin Rudowitz, and Barbara Lyons, Medicaid Work Requirements in Arkansas: Experience and Perspectives of Enrollees (Washington, DC: Kaiser Family Foundation, December 2018), https://modern.kff.org/medicaid/issue-brief/medicaid-work-requirements-in-arkansas-experience-and-perspectives-of-enrollees/ ↩︎
38. Kaiser Family Foundation, Implications of Emerging Waivers on Streamlined Medicaid Enrollment and Renewal Processes, (Washington, DC: Kaiser Family Foundation, February 2018), https://modern.kff.org/medicaid/fact-sheet/implications-of-emerging-waivers-on-streamlined-medicaid-enrollment-and-renewal-processes/ ↩︎
39. Tennessee is phasing the online application in by county with statewide access planned for early 2019. ↩︎
40. The Oklahoma Legislature, HB 1270, 56th Legislature (2017), accessed March 11, 2019, http://www.oklegislature.gov/BillInfo.aspx?Bill=hb1270&Session=1800 ↩︎
41. The Mississippi Legislature, HB 1010, Regular Session 2017, accessed March 11, 2019, http://billstatus.ls.state.ms.us/2017/PDF/history/HB/HB1090.xml ↩︎
42. Martha Heberlein, Tricia Brooks, Joan Alker, Samantha Artiga and Jessica Stephens, Getting into Gear for 2014: Findings from a 50-State Survey of Eligibility, Enrollment, Renewal, and Cost Sharing Policies in Medicaid and CHIP, 2012-2013, (Washington, DC: Kaiser Family Foundation, January 2013), https://modern.kff.org/medicaid/report/getting-into-gear-for-2014-findings-from-a-50-state-survey-of-eligibility-enrollment-renewal-and-cost-sharing-policies-in-medicaid-and-chip-2012-2013/. ↩︎
43. Samantha Artiga, Petry Ubri, and Julia Zur, The Effects of Premiums and Cost Sharing on Low-Income Populations: Updated Review of Research Findings ((Washington, DC: Kaiser Family Foundation, June 2017), https://modern.kff.org/medicaid/issue-brief/the-effects-of-premiums-and-cost-sharing-on-low-income-populations-updated-review-of-research-findings/ ↩︎
44. Larisa Antonisse, Rachel Garfield, Robin Rudowitz, and Samantha Artiga, The Effects of Medicaid Expansion under the ACA: Updated Findings from a Literature Review, (Washington, DC: Kaiser Family Foundation, March 2018), https://modern.kff.org/medicaid/issue-brief/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review-march-2018/        ↩︎
45. Larisa Antonisse and Robin Rudowitz, An Overview of State Approaches to Adopting the Medicaid Expansion, (Washington, DC: Kaiser Family Foundation, February 2019), https://modern.kff.org/report-section/an-overview-of-state-approaches-to-adopting-the-medicaid-expansion-issue-brief/ ↩︎
46. Robin Rudowitz and MaryBeth Musumeci, “Partial Medicaid Expansion” with ACA Enhanced Matching Funds: Implications for Financing and Coverage, (Washington, DC: Kaiser Family Foundation, February 2019), https://modern.kff.org/medicaid/issue-brief/partial-medicaid-expansion-with-aca-enhanced-matching-funds-implications-for-financing-and-coverage/ ↩︎
47. Governor Janet Mills, Letter to CMS Administrator Seema Verma, January 22, 2019, https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/me/mainecare/me-mainecare-approval-reponse-ltr-01222019.pdf ↩︎
48. Office of Governor Michelle Lujan Grisham, “Gov. Lujan Grisham Announces Plan to Reverse Medicaid Policies that Create Barriers to Accessing Coverage,” (Office of Governor Michelle Lujan Grisham, Press Release, February 13, 2019), https://www.governor.state.nm.us/2019/02/13/gov-lujan-grisham-announces-plan-to-reverse-medicaid-policies-that-create-barriers-to-accessing-coverage/ ↩︎
49. South Carolina Department of Health and Human Services, “Community Engagement Section 1115 Waiver Application,” South Carolina Department of Health and Human Services (March 4, 2019), https://www.scdhhs.gov/public-notice/community-engagement-section-1115-demonstration-waiver-application-0 ↩︎
50. The Alaska State Legislature, SB 7, 31st Legislature (2019-2020), accessed March 11, 2019, http://www.akleg.gov/basis/Bill/Detail/31?Root=sb%207 ↩︎
51. The Iowa Legislature, Senate File 538, 88th General Assembly, accessed March 11, 2019, https://www.legis.iowa.gov/legislation/BillBook?ba=SF%20538&ga=88 ↩︎
52. The Montana Legislature, HB 658, 66th Legislature, accessed March 25, 2019, http://laws.leg.mt.gov/legprd/LAW0210W$BSIV.ActionQuery?P_BILL_NO1=658&P_BLTP_BILL_TYP_CD=HB&Z_ACTION=Find&P_SESS=20191 ↩︎
53. Rachel Garfield, Robin Rudowitz, and MaryBeth Musumeci, Implications of a Medicaid Work Requirement: National Estimates of Potential Coverage Losses Appendix, (Washington, DC: Kaiser Family Foundation, June 2018), https://modern.kff.org/report-section/implications-of-a-medicaid-work-requirement-national-estimates-of-potential-coverage-losses-appendix/ ↩︎
54. Kaiser Family Foundation, Implications of Emerging Waivers on Streamlined Medicaid Enrollment and Renewal Processes, (Washington, DC: Kaiser Family Foundation, February 2018), https://modern.kff.org/medicaid/fact-sheet/implications-of-emerging-waivers-on-streamlined-medicaid-enrollment-and-renewal-processes/ ↩︎
55. Rachel Garfield, Kendal Orgera, and Anthony Damico, The Uninsured and the ACA: A Primer – Key Facts about Health Insurance and the Uninsured amidst Changes to the Affordable Care Act, (Washington, DC: Kaiser Family Foundation, January 2019), https://modern.kff.org/uninsured/report/the-uninsured-and-the-aca-a-primer-key-facts-about-health-insurance-and-the-uninsured-amidst-changes-to-the-affordable-care-act/ ↩︎
56. Centers for Medicare and Medicaid Services, “Medicaid & CHIP Monthly Applications, Eligibility Determinations, and Enrollment Reports: January 2014 – December 2018 (preliminary)”, Centers for Medicare and Medicaid Services, (February 28, 2019), https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/monthly-reports/index.html ↩︎
57. Tricia Brooks, Child Enrollment in Medicaid and CHIP Down 600k Children in 2018, (Washington, DC: Georgetown University Center for Children and Families, March 2019), https://ccf.georgetown.edu/2019/03/02/child-enrollment-in-medicaid-and-chip-took-another-hit-in-november-down-600k-children-in-2018/ ↩︎
58. Phil Galewitz, “Missouri’s shrinking Medicaid rolls raise red flag on vetting process,” Kaiser Health News, (February 11, 2019), https://www.stltoday.com/news/local/govt-and-politics/missouri-is-pushing-eligible-people-off-medicaid-including-thousands-of/article_c4bbec5b-26e5-55a6-936a-8904224dbfa7.html? ↩︎
59. 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, (Washington, DC: Kaiser Family Foundation, 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/ ↩︎
60. Michael Ollove,”Child Enrollment in Public Health Programs Fell by 600K Last Year,” Governing, (March 8, 2019),   http://www.governing.com/topics/health-human-services/sl-chip-medicaid-children-enrollment.html ↩︎
61. Samantha Artiga, Rachel Garfield, and Anthony Damico, Estimated Impacts of the Proposed Public Charge Rule on Immigrants and Medicaid, (Washington, DC: Kaiser Family Foundation, October 2018), https://modern.kff.org/disparities-policy/issue-brief/estimated-impacts-of-the-proposed-public-charge-rule-on-immigrants-and-medicaid/. ↩︎

Executive Summary

Community health centers play a vital role in ensuring access to comprehensive primary care services for medically underserved communities. In 2017, 1,373 federally-funded health centers served 27.2 million patients. Health centers receive funding from multiple sources, but are primarily reliant on revenue from Medicaid and Section 330 grants.

• What are the sources of health center revenue? Revenue from Medicaid and Section 330 funding account for nearly two-thirds of health center funding. Medicaid is the largest source of health center funding accounting for 44% of total revenue. Section 330 funding accounts for 18% of total revenue.
• How do Medicaid’s special payment rules support health centers? Medicaid reimburses health centers under the Prospective Payment System (PPS), which ties payments to the costs of delivering care. Under PPS, each health center receives a per visit rate based on the cost of services to Medicaid patients that is updated annually to reflect medical inflation and costs of new Medicaid-covered services. While PPS payments align generally with the costs of providing care, shortfalls have emerged. In 2010, Medicaid paid 81% of health centers’ cost-linked charges; by 2017, payments covered 79%. Despite this shortfall, from 2010 to 2017, health center Medicaid revenue increased 97% when adjusted for inflation, reflecting the increase in Medicaid patients served by health centers following implementation of the Medicaid expansion. On a per patient basis, health center Medicaid revenue grew by only 11% suggesting the increase in Medicaid spending is the result of enrollment increases and not per-patient cost escalation.
• What is the role of Section 330 grant funding? Section 330 of the Public Health Service Act created and authorized the health center program and permits the Health Resources and Services Administration (HRSA) to make grants to health centers. Section 330 grant funding supports health centers through two funding streams, an annual appropriation and the Community Health Center Fund (CHCF). Since the establishment of the CHCF in 2010 to supplement health centers’ regular, annual appropriation, total Section 330 health center grant funding has more than doubled, from $2.2 billion in FY 2010 to $5.6 billion in FY 2019. Funds from the CHCF now account for 72% of total Section 330 funding. Annual Section 330 grants support ongoing care to the uninsured and underinsured, while the expanded funding available through the CHCF has enabled health centers to establish new sites, expand the services they provide, reach more patients, and respond to emerging public health issues and priorities such as the President’s HIV/AIDS initiative.

  In 2017, 1,373 federally-funded community health centers served 27.2M patients and played a key role in ensuring access to comprehensive primary care for medically underserved communities. Centers rely heavily on money from Medicaid and Section 330 grants

• How have funding changes affected health centers? Increases in the key sources of health center funding, Medicaid and Section 330 grants, have enabled health centers to expand their capacity and services. From 2010 to 2017, the number of health center sites increased 59%to 11,056, the number of patients served increased 40% to 27.2 million, and total staff increased 70% to 223,840 FTEs.

Stable financing from Medicaid and expanded Section 330 grant funding have enabled health centers to play an increasingly important role in providing care to vulnerable populations and communities and in advancing health policy priorities. The CHCF is due to expire in September 2019. An important policy question Congress will consider this year is whether to extend the life of the CHCF and if so, for how long and for how much.

Introduction

Since their 1965 beginning as a small War on Poverty experiment, community health centers have matured into a principal part of the health system for thousands of medically underserved urban and rural communities that experience elevated poverty and health risks. In 2017, 1,373 federally-funded health centers operating in over 11,000 community locations nationwide cared for 27.2 million patients.¹  Health centers serve patients of all ages and provide an entry point into specialized care, and frequently, a bridge to services aimed at addressing underlying social determinants of health.²  To provide this care, health centers rely on multiple funding sources. The two major funding sources are Medicaid payments for covered services furnished to enrollees who are health center patients, along with federal grants made pursuant to Section 330 of the Public Health Service Act, which establishes and authorizes the health centers program. This issue brief describes health centers’ role in health care and these two primary sources of health center revenue—Medicaid and Section 330 funding. The evolution of these funding streams has contributed to significant growth in the health center program, enabling expanded services to millions of additional residents of the nation’s most medically underserved rural and urban communities.

Background

Health centers play an especially important role for certain patient populations. Health centers serve communities facing many challenges, including elevated poverty, increased health risks, and shortages of primary care and other providers. Reflecting the characteristics of these communities, in 2017, nearly all health center patients (91%) were low-income, and 69% were poor (Figure 1).³  Compared to other low-income populations, health center patients tend to be in poorer health.⁴  In 2017, nearly half (49%) of all health center patients were covered by Medicaid and over one in five (23%) were uninsured. To ensure access to affordable care, health centers adjust their charges in accordance with patient income. Charges cannot exceed the cost of care, and payment discounts must apply to both uninsured patients and those who are underinsured and face the cost of uncovered services (such as adult vision and dental care) and high cost sharing.

Health centers have increasingly adopted a comprehensive approach to patient care by providing a broad array of physical health, behavioral health, and supportive services. Health centers’ focus on addressing the needs of vulnerable, underserved communities is reflected in approaches to care not typical of standard medical practices, such as the integration of physical and mental health care services, location in community settings, such as schools and homeless shelters, and the provision of on-site services for addiction treatment and recovery and oral health. This co-location and integration of services enables health centers to participate in Medicaid delivery and payment reform strategies aimed at improving health care quality and efficiency and to serve as an entry point into a broader array of services.

What are the sources of health center revenue?

Revenue from Medicaid and Section 330 grant funding account for nearly two-thirds of health center funding. Like all health care providers, health centers derive their operating revenue from multiple sources. In the case of health centers, these sources are public and private insurance payments, grants from public and private funders, and patient out-of-pocket payments. Reflecting the federal law under which they operate as well as the poverty of their patients, health centers rely most heavily on Medicaid revenue and their ongoing operating grants under Section 330 of the Public Health Service Act, which authorizes the health centers program. Medicaid accounts for 44% of operating revenue nationally; Section 330 grants account for 18%; together, these two funding sources represent nearly two thirds of health center funding (Figure 1). Other revenue sources, while notable, play a less significant role. Private insurance accounts for 10% of health center revenue, while Medicare represents 7% of revenue. Direct patient payments account for only 4% of all revenue, a reflection of the poverty of health center patients.

Health centers also receive funding from other sources, to be used to provide specific services or to serve specific populations. Examples of these dedicated funding streams include grants for preventive reproductive health care under the Title X family planning program, Veterans Administration service contracts covering veterans who are patients, and contracts with state or local corrections authorities for services furnished inside a correctional institution or care for former inmates transitioning to the community. Health centers also receive state and local public health grants for preventive services such as funds to help support the cost of vision screening or services to screen and treat for communicable diseases. In total, these other federal, state, local, and private grants and contracts account for 12% of all health center operating revenue.

How do Medicaid’s special payment rules support health centers?

Medicaid pays health centers under the Prospective Payment System (PPS), which ties payments to the costs of delivering care. Health centers are a federally recognized type of Medicaid provider. Like all health care providers, to participate in their state Medicaid program, health centers must meet any reasonable conditions that states may apply to health care providers generally, such as basic licensure rules. However, unique to health centers and rural health clinics is a requirement that state Medicaid programs pay them according to a special cost-related payment formula. The purpose of these cost-related payment rules in Medicaid is to ensure that federal grant funds are used to pay for uninsured or under-insured patients and important but uncovered services and do not have to absorb uncovered costs associated with providing covered services to Medicaid patients. The earliest health center payment rules were added to Medicaid in 1990, while the current PPS was established in 2000 by the Medicare, Medicaid and SCHIP Benefits Improvement and Protection Act. PPS applies to both health centers and rural health clinics, and it is designed to ensure that, in keeping with early policy assumptions regarding Medicaid’s role in sustaining health centers as a principal source of primary care in underserved communities,⁵  Medicaid payments reasonably approximate the cost of care. The PPS payment system also applies to Medicare and CHIP, as well as payments made by Qualified Health Plans certified under the Affordable Care Act.Under PPS, each health center receives a predetermined per visit rate based on the cost of services to Medicaid patients. This rate is updated annually to reflect medical inflation. PPS rates are also updated to reflect costs associated with the addition of new Medicaid-covered services such as on-site substance use disorder treatment and recovery services, expanded physical and speech therapy services for children with developmental disabilities, or dental services.Under Medicaid PPS rules, state Medicaid agencies and their health centers may jointly develop alternative payment methodologies (APMs) to test innovative payment approaches. Such payment methodologies include all-inclusive payment rates for certain types of ongoing care or certain populations (e.g., a global annual payment for patients receiving health home services, or an all-inclusive per-member-per-month payment rate for all patients of the health center).⁶  States and health centers have begun to test such alternative payment models in order to experiment with approaches that better tie payment to performance rather than the volume of care furnished;⁷  models must maintain basic protections against steep revenue shortfalls of the type that led to the establishment of the PPS system in the first place.The Medicaid PPS model has ensured that payments to health centers remain somewhat related to the cost of care; however, while PPS maintains a degree of alignment between cost and revenue, costs continue to rise faster than the payment rate. In 2010, Medicaid paid 81% of health centers’ cost-linked charges; by 2017, payments only covered 79% (Table 1). But even with this gap, Medicaid is a far stronger payer than Medicare or private insurance. Although Medicare also uses the PPS formula, Medicare covers a more limited scope of primary care and mental health services and requires higher patient cost-sharing. For example, Medicare excludes vision and dental care, meaning that in serving low-income Medicare beneficiaries who are not also qualified for full Medicaid coverage, health centers must absorb the cost of subsidizing these uncovered services through their grants. As a result, on a per-patient basis, Medicare payment rates are lower than those received through Medicaid; in 2017, Medicare covered only 58% of charges. Private health insurance is typically the lowest payer, and may pay less for the covered services while also using higher cost sharing and excluding many forms of necessary care. In 2017, private insurance payments covered 56% of the private insurance charges.

Despite a surge in the number of patients served, per-patient Medicaid spending at health centers has grown only modestly. The number of Medicaid patients served by health centers has increased over time, with a significant surge following implementation of the ACA’s Medicaid expansion in 2014. From 2010 to 2017, the number of health center Medicaid patients increased 78% from 7.5 million to 13.3 million (Table 2). During this period, health center Medicaid revenue also nearly doubled, increasing 97% when adjusted for inflation. However, on a per patient basis, health center Medicaid revenue increased a much more modest 11%. This suggests that the growth in health center Medicaid revenue is the result of the increase in the number of patients served⁸  rather than per-patient cost escalation. Although the FQHC payment methodology calls for annual medical inflation adjustments, the growth in health center per patient Medicaid revenue is half the cumulative medical inflation rate of 22% over the same period. This slow per-patient spending growth rate at health centers is consistent with other research showing low per capita spending growth changes over time, which attributes overall Medicaid spending growth primarily to increased enrollment.⁹ 

What is the role of Section 330 grant funding?

Section 330 funding supports health centers through two funding streams, an annual appropriation and the Community Health Center Fund (CHCF), established by the Affordable Care Act (Table 3). Originally, Section 330 grant funding flowed exclusively through the annual discretionary appropriations process, as part of the overall appropriation made to the Departments of Labor and Health and Human Services. However, in 2010, as part of the Affordable Care Act, Congress created the Community Health Center Fund (CHCF), supported through a special mandatory spending account rather than the normal discretionary process. Both the CHCF and the annual appropriation are subject to all Section 330 requirements. Creating the CHCF effectively split annual health center funding into two pots – one subject to the annual appropriations process, and the other governed by the length of the CHCF authorization, but flowing automatically and without an annual appropriation. The original CHCF was authorized for five years. Because the CHCF is time-limited, Congress has twice extended it for two years, first in 2015 and then again in 2018.¹⁰  The current extension will sunset on September 30, 2019.

In the nine years since the creation of the CHCF, Section 330 health center funding more than doubled. When the CHCF was first established, it accounted for less than half (40%) of Section 330 funding;¹¹  however, between FY2011 and FY2019, lawmakers increased funding through the CHCF while holding the annually appropriated amount relatively constant. By fiscal year 2018, the CHCF accounted for 72% of Section 330 grant funding; only 28% came through annual discretionary appropriations.¹²  At the same time, the creation of the CHCF, and its subsequent funding increases, contributed to total Section 330 health center funding more than doubling, from $2.2 billion in FY 2010 to $5.6 billion in FY 2019 (Figure 2).

In addition to annual grants that support ongoing operations, Section 330 funding also provides health centers with supplemental grants to expand capacity, improve care, and respond to emerging priorities. Over the years, Section 330 funds have supported the opening of new access points in previously unserved communities, expanded access to addiction treatment and recovery or mental health services programs¹³ , and enhanced health information technology capability¹⁴  to affiliate with managed care plans or integrated delivery systems such as accountable care organizations. Federal appropriations also have been invested to increase the number of behavioral health care staff¹⁵  and enable health centers to respond to public health crises such as the hurricanes in Puerto Rico and Houston,¹⁶  and the Zika virus.¹⁷  In this way, grants are critical not only because they fund ongoing care for uninsured populations and services, but also because they supply health centers with the working capital needed to expand capacity and services that providers that do not serve poor communities typically would find from private investors and lenders.

Section 330 funding can also be used to advance policy priorities. As part of the recently announced goal to end the HIV/AIDS epidemic by 2030, one strategy will be to grow health center capacity to find and treat patients in the nation’s most vulnerable communities, who are at risk for or living with HIV/AIDS. Health centers serve an estimated one in five people living with HIV who are receiving care for their condition.¹⁸  The administration has explicitly identified health centers as key to its response¹⁹  and has proposed dedicating $50 million in health center grant funding to expand access to prophylactic HIV treatment (PrEP) along with expanded HIV/AIDS services, outreach and care coordination as part of the President’s FY 2020 budget.²⁰ 

How have funding changes affected health centers?

Funding increases have spurred health center growth, expanding access to needed services for vulnerable populations. The revenue increases flowing from the combination of broader Medicaid and private insurance coverage and increased grant funding under the CHCF have enabled health centers to increase their reach, staffing, and the scope of the services they offer. In 2010, a total of 1,124 health center grantees operated in 6,949 sites; by 2017, total grantees had grown to 1,373 and total operating sites reached 11,056 (Figure 3). Total health center staffing stood at 131,660 full-time equivalents (FTEs) in 2010; by 2017, this figure had grown to 223,840.This growth translated into greater service capacity, not simply more patients. From 2010 to 2017, the share of health centers providing mental health services increased by 22%, while the share offering substance use disorder services grew by 75%. The share of health centers offering dental health services also increased over this same period, but by a more modest 7%. In 2010, health centers served 19.5 million patients on a total operating revenue base of $12.7 billion; by 2017, this figure had grown to 27.2 million patients on a total revenue base of $26.3 billion.

Looking Ahead

Health centers have become a significant part of the health care landscape in medically underserved communities across the nation, both as a major source of primary care health and increasingly, as entry points into care for patients with more complex health needs. Consistent with the original vision of how health centers could be sustained over time, today’s health centers receive their principal support through Medicaid payments and grant funding. Together these two funding sources cover the cost of care to Medicaid-insured patients, enable health centers to make needed care available to uninsured patients, and help underinsured patients meet out-of-pocket costs for uncovered services and high cost-sharing they otherwise could not afford. Other sources of grant and insurance funding enable health centers to target key populations and services, but Medicaid and Section 330 grants are the mainstay.

The success and durability of the health centers model can be seen in the many roles health centers play in the health care system. They are on the front lines of the opioid epidemic. They are an important source of care during natural disasters, such as hurricanes, and public health threats, such as the Zika virus. They are a key element in the national effort to halt the spread of HIV. And, they serve as a model for the design of health homes that integrate behavioral health and physical health care. Sustainable financing through Medicaid and Section 330 grants is essential to ensuring that health centers will be able to continue to fill these important roles.

Because the stable financing of health centers is key to their long-term performance, an important policy question Congress will consider this year is whether to extend the life of the CHCF and if so, for how long. The original fund was authorized for five years, but since 2015, the CHCF has been extended in two-year cycles, with the current authorization set to expire on September 30, 2019. Since the CHCF now represents over 70% of Section 330 health center grant funding, establishing a longer funding period has emerged as a significant factor enabling health centers to continue as a key resource and flexible tool for responding to emerging population health needs.

1. Sharac, J., Shin, P., Gunsalus, R., & Rosenbaum, S. (2018). Community Health Centers Continued to Expand Patient and Service Capacity in 2017. Geiger Gibson/RCHN Community Health Foundation Research Collaborative, George Washington University. Policy Research Brief No. 54. https://www.rchnfoundation.org/?p=7172 ↩︎
2. Bruna, S., Stone, L. C., Wilger, S., Cantor, J., & Guzman, C. (2014). The role of community health centers in assessing the social determinants of health for planning and policy: The example of Frontier New Mexico. The Journal of Ambulatory Care Management, 37(3), 258-268.; Institute for Alternative Futures. (2012). Community Health Centers Leveraging the Social Determinants of Health.http://www.altfutures.org/leveragingsdh/ ; National Association of Community Health Centers. (2012). Powering Healthier Communities: Community Health Centers Address the Social Determinants of Health. ↩︎
3. Bureau of Primary Health Care. (2018). 2017 Health Center Data: National Data. (Table 4). Health Resources and Services Administration. https://bphc.hrsa.gov/uds/datacenter.aspx?q=tall&year=2017&state= ↩︎
4. Shin, P., Alvarez, C., Sharac, J., Rosenbaum, S., Van Vleet, A., Paradise, J., Garfield, R. (2013) A Profile of Community Health Center Patients: Implications for Policy. Kaiser Commission on Medicaid and the Uninsured, Kaiser Family Foundation and the RCHN Community Health Foundation. https://modern.kff.org/wp-content/uploads/2013/12/8536-profile-of-chc-patients.pdf ↩︎
5. Davis, K. & Schoen, C. (1978). Health and the War on Poverty. Brookings Institution. ↩︎
6. National Association of Community Health Centers. (2018). The Facts about Medicaid’s FQHC Prospective Payment System (PPS). http://www.nachc.org/wp-content/uploads/2018/06/PPS-One-Pager-Update.pdf ; National Association of Community Health Centers. (2017). The FQHC Alternative Payment Methodology Toolkit: Fundamentals of Developing a Capitated FQHC APM. http://www.nachc.org/wp-content/uploads/2017/08/NACHC_APMToolkit-1.pdf ↩︎
7. Donlon, R., Dorr, H., & Purington, K. (2018). State Strategies to Develop Value-Based Payment Methodologies for Federally Qualified HealthCenters. National Academy for State Health Policy. https://nashp.org/wp-content/uploads/2018/05/Toolkit-State-Strategies-to-Develop-Value-Based-Alternative-Payment-Methodologies-for-FQHCs.pdf ↩︎
8. Sharac, J., Shin, P., Gunsalus, R., & Rosenbaum, S. (2018). Community Health Centers Continued to Expand Patient and Service Capacity in 2017. Geiger Gibson/RCHN Community Health Foundation Research Collaborative, George Washington University. Policy Research Brief No. 54. https://www.rchnfoundation.org/?p=7172 ↩︎
9. Holahan, J. & McMorrow, S. (2019). Slow Growth in Medicare and Medicaid Spending per enrollee has Implications for Policy Debates. Urban Institute. Available at https://www.urban.org/research/publication/slow-growth-medicare-and-medicaid-spending-enrollee-has-implications-policy-debates ↩︎
10. Congressional Research Service. (2018). The Community Health Center Fund: In Brief. https://www.everycrsreport.com/files/20180705_R43911_f21100072a0b68222720faa22cf9ce1dc3579192.pdf ↩︎
11. Id. ↩︎
12. Id. ↩︎
13. https://bphc.hrsa.gov/programopportunities/fundingopportunities/sud-mh/ ↩︎
14. https://bphc.hrsa.gov/qualityimprovement/strategicpartnerships/hccn.html ↩︎
15. https://bphc.hrsa.gov/programopportunities/fundingopportunities/behavioral-health-workforce/ ↩︎
16. https://bphc.hrsa.gov/programopportunities/fundingopportunities/Default.aspx?id=d2f001da-6b8e-47a5-b2ac-1a8703f2536a ↩︎
17. https://bphc.hrsa.gov/programopportunities/fundingopportunities/zika/fy2017awards/ ↩︎
18. Rosenbaum, S., Sharac, J., Shin, P., & Gunsalus, R. (2019). Community Health Centers and the President’s HIV Initiative: Issues and Challenges Facing Health Centers in High-Burden States and Communities. Geiger Gibson/RCHN Community Health Foundation Research Collaborative, George Washington University. Policy Research Brief No. 56. https://www.rchnfoundation.org/?p=7834 ↩︎
19. Fauci, A. S., Redfield, R. R., Sigounas, G., Weahkee, M. D., & Giroir, B. P. (2019). Ending the HIV Epidemic: A Plan for the United States. JAMA. https://jamanetwork.com/journals/jama/fullarticle/2724455?utm_campaign=+36554179&utm_content=&utm_medium=email&utm_source=govdelivery&utm_term= ↩︎
20. Fiscal Year 2020 HHS Budget in Brief (March 11, 2019), available at https://www.hhs.gov/sites/default/files/fy-2020-budget-in-brief.pdf ↩︎

Key Findings:

• Kaiser Family Foundation has been tracking the public’s attitudes towards the domestic HIV/AIDS epidemic for more than two decades and this month’s survey explores the public’s attitudes towards and experiences with HIV/AIDS in the U.S., in light of President Trump’s announcement of his plan to eliminate the HIV epidemic in the U.S. within ten years.¹  Few say they have heard about the Trump administration’s goal but, while not knowledgeable about the initiative, majorities across partisanship are confident that the goal of reducing the number of new HIV infections in the U.S. to near zero by 2030 can be achieved.
• Most Americans (80 percent) say the impact of HIV/AIDS in the country is a “serious issue” and large shares of the public – especially black Americans and Hispanic Americans – say HIV/AIDS is a “serious concern” for people they know. Nearly four in ten black adults (41 percent) and half (51 percent) of Hispanic adults say they are concerned about getting HIV – including more than three in ten who say they are “very concerned.”

  POLL: Most Americans do not know about PrEP, a prescription medication that dramatically lowers the risk of getting HIV when taken as a preventive measure.

• The survey also assessed public awareness of newer HIV prevention strategies. Knowledge of a prescription medication that helps lower the risk of getting HIV has increased over time, from 14 percent in 2014 to 42 percent in the most recent tracking survey, including a significant increase among black adults (18 percent to 55 percent). But a majority are still unaware of this medication. The survey also finds there are still gaps in the understanding of the effectiveness of antiretrovirals (ARVs), the medications used to treat HIV.
• This month’s KFF Health Tracking Poll also probes the public on why they may support or oppose a national health plan and find that people’s responses tend to echo the messages emphasized by both sides of the debate. The most common reason given by supporters when asked why they favor such a plan is because they support universal coverage or in the words of one respondent, “I think we should have affordable decent health care for everybody.” On the other side, opponents of a national health plan offer reasons such as they don’t want the government involved in health care (23 percent), it will be too expensive to implement (14 percent), or that it will limit choice and competition (14 percent).
• The survey continues to find Democrats evenly divided on whether they want their lawmakers to focus on improving and protecting the ACA (44 percent) or passing a national Medicare-for-all plan (46 percent).

Public’s Attitudes towards the Domestic HIV/AIDS Epidemic

President Trump announced in his State of the Union speech on February 5^th his administration’s plan to eliminate the HIV epidemic in the U.S. within ten years. This month’s survey explores the public’s confidence in this plan as well as more general attitudes and experiences with HIV/AIDS in the U.S.. KFF has been tracking the public’s attitudes towards the domestic HIV/AIDS epidemic for more than two decades.

The March 2019 KFF Health Tracking Poll finds half of the public (52 percent) saying “the U.S. is making progress” when it comes to the impact of HIV in the country today, compared to fewer who either say “the problem is about the same as it has been” (33 percent) or “the U.S. is losing ground” (8 percent). This is consistent across party identification, race/ethnicity, and whether individuals know someone currently living with HIV.

The share of the public who say “the U.S. is making progress” has increased 12 percentage points since 2014, when four in ten said the U.S. was making progress. In 2014, a larger share of the public said “the problem was the same as it has been” (45 percent compared to 33 percent today).

Views on whether President Trump and his administration are “doing enough” to help solve the problem of HIV/AIDS in this country vary by party. Most Republicans (57 percent) say President Trump and his administration are “doing enough,” while a majority of Democrats say they are “not doing enough” (83 percent); a larger share of independents say the Administration is “not doing enough” (51 percent) than say they are “doing enough” (25 percent).

While there are partisan differences in perceptions of whether President Trump and his administration are doing enough to help solve the problem of HIV/AIDS in this country, majorities across partisanship are confident that the goal of reducing the number of new HIV infections in the U.S. to near zero by 2030 can be achieved. Six in ten Republicans and Democrats (59 percent) say they are either “very confident” or “somewhat confident” that the U.S. can achieve this goal. Independents are divided, with half saying they are confident (49 percent) that the U.S. can achieve this goal, while the other half say they are either “not too confident” (31 percent) or “not at all confident” (17 percent).

Most Americans See HIV/AIDS As A Serious Problem Facing the U.S.

As the Administration pursues its new HIV initiative, 1 in 3 Americans say the epidemic is “very serious” for the country and 1 in 4 say it’s “very serious” for people they know

Eight in ten overall say the issue of HIV/AIDS is a serious issue in the U.S. today and nearly half (46 percent) say it is a serious concern for people they know. This is similar to the share who reported the same in 2011 (41 percent).

How Americans Experience HIV/AIDS Differs By Race and Ethnicity

Two-thirds of black adults and nearly half of Hispanic adults (45 percent), populations that have been disproportionately affected by HIV, say HIV/AIDS is a “very serious” issue for the U.S. today. At least four in ten of both black adults (49 percent) and Hispanic adults (43 percent) also say HIV/AIDS is a “very serious” concern for people they know. These shares are larger than the share of white adults who say the same (26 percent and 16 percent, respectively).

These differences by race also extend to people’s own personal concerns with nearly four in ten black adults (41 percent) and half (51 percent) of Hispanic adults saying they are concerned about getting HIV compared to one in ten white adults (12 percent).

This month’s tracking survey finds most of the public saying they are comfortable working with someone who is living with HIV (79 percent), having a close friendship with someone who is living with HIV (77 percent), and sharing a living space with someone who is living with HIV (62 percent). This is also true among black, Hispanic, and white adults.

This continues the long-term trend found in KFF polling of increasing comfort levels around people with HIV/AIDS. For example, in 1997, 32 percent of Americans said they would be “very comfortable” working with someone who is living with HIV while the most recent survey finds half (52 percent) now say they are “very comfortable” working with someone living with HIV. In addition, in 2006, one-fourth said they would be “very comfortable” having a roommate who is living with HIV and now one-third (35 percent) say they would be “very comfortable” sharing a living space with someone who is living with HIV.

Increase in Awareness of PrEP, But Still Below 50% Overall

In 2012, the FDA approved Truvada as a pre-exposure prophylaxis (PrEP) against HIV. This prescription medication is for people who do not have HIV, to lower their risk of getting HIV. The share of the public who are aware there is a prescription medication to lower the risk of getting HIV has increased significantly since 2014, but is still less than 50 percent of the public, overall. Currently, four in ten (42 percent) Americans are aware there is a prescription medication that helps lower the risk of getting HIV, including majorities of black adults (55 percent) and nearly half of Hispanic adults (47 percent).

Five years ago, 14 percent of the public knew about a prescription medication that people who are HIV-negative could take to lower their risk of becoming infected. The increase in awareness is consistent across most demographic groups but some populations’ awareness has increased at a more striking rate. For example, the share of black adults who know about this prescription medication has increased from 18 percent in 2014 to 55 percent in 2019.

Yet, few (13 percent) say they have heard either “a lot” or “a fair amount” about PrEP, or the brand name Truvada; including less than one-fifth of black adults (17 percent), Hispanic adults (16 percent), and white adults (11 percent). A 2018 CDC analysis that found only a small percentage of Americans who could benefit from PrEP have been prescribed it.

Public Knowledge around Treatment and Prevention of HIV/AIDS Remains an Issue

There are gaps in understanding when it comes to how antiretrovirals (ARVs), the medications used to treat HIV, work. ARVs are recommended for all people with HIV as soon as they are diagnosed and have resulted in dramatic reductions in mortality and morbidity and significant improvements in health for people living with HIV.²  Despite this scientific evidence, small shares are aware the medications used to treat people living with HIV are “very effective” at both improving the health of people living with HIV (27 percent) and preventing the spread of the virus (15 percent).

About one-fourth (27 percent) of white, black, and Hispanic adults say these medications are “very effective” at improving the health of people with HIV while a slightly larger share of black adults (28 percent) and Hispanic adults (23 percent) than white adults (11 percent) say these medications are “very effective” at preventing the spread of HIV to sexual partners.

Research has found consistent use of antiretroviral therapy can reduce the amount of virus in the body to levels that are undetectable by standard lab test. When someone with HIV is undetectable, according to the CDC, there is effectively no risk of sexual transmission. Overall, about four in ten (39 percent) say they have heard the term “undetectable” before and know what it means, but the majority of people either say they haven’t heard the term before (52 percent) or they have heard it but they do not know what it means (8 percent).

In addition, less than half are aware the domestic HIV epidemic has had a greater impact on black Americans (41 percent) and Hispanic Americans (18 percent) than it has on white Americans.

On March 4, 2019, scientists publicly announced a second case of long-term remission in a patient with HIV. While technically not a “cure,” it has been described as such by some experts and in the mainstream media.³  When asked, two-thirds (67 percent) say there is currently no cure for HIV, while about one-fourth of the public (26 percent) say there is a cure for HIV.

Public Views of ACA and Medicare-for-all

Nine years since the passing of the Affordable Care Act (ACA), the public still holds largely partisan views over the health reform law and opinions have remained relatively unchanged for the past two years since the Republican efforts to repeal the law. Half of the public hold favorable opinions of the ACA, including eight in ten Democrats, nearly half of independents (45 percent), and about one-fifth of Republicans (17 percent). About four in ten (39 percent) of the public overall hold a negative opinion of the law including three-fourths of Republicans, four in ten independents (41 percent), and one in ten Democrats.

This partisan divide is also evident in the public’s support for a national health plan, or Medicare-for-all, in which all Americans would get their insurance from a single government plan. Majorities of Democrats and independents support a Medicare-for-all plan (78 percent and 54 percent, respectively), while most Republicans (71 percent) oppose such a proposal.

While Democrats are more likely than Republicans and independents to hold a favorable view of the ACA, Democrats are evenly divided in their views of whether they think Congress should focus on the ACA or on passing a national Medicare-for-all plan. When asked to choose, similar shares of Democrats say they would rather Democrats in Congress focus their efforts on “improving and protecting the ACA” (44 percent) as say they would rather Congress focus on “passing a national Medicare-for-all plan” (46 percent). The share who say they want Democrats in Congress to focus on “improving and protecting the ACA” has varied slightly in recent months.

Why People Favor or Oppose Medicare-for-all?

When the mostly Democratic supporters are asked to say in their own words the main reason why they favor a Medicare-for-all plan, a plurality (40 percent) provide responses related to universal coverage, including nearly one in ten (7 percent) who explicitly say it is because they believe health care is a right. One in five (17 percent) say making health care more affordable and addressing high costs is the main reason they support a national health plan. The reasons offered echo the same themes emphasized by the plan’s proponents so far in the debate.

On the other side of the argument, nearly one in four opponents of a national Medicare-for-all plan (23 percent) cite concerns about government involvement in health care as the main reason for their opposition. Nearly one in eight (14 percent) offer that it is too expensive to implement as the main reason they oppose a national Medicare-for-all plan, which is the same as the share who say that they oppose it because it limits consumer choice (14 percent).

Similarly, when supporters of a national health plan are asked about the importance of some possible features of such a plan, nine in ten (89 percent) say it is “very important” that it covers all Americans while eight in ten (79 percent) say it is “very important” that it simplifies the health care system. Smaller majorities say it is “very important” that a national health plan eliminates health care costs like monthly premiums (56 percent) or out-of-pocket costs like copays and deductibles (56 percent). Fewer supporters of a national health plan say it is “very important” that such a plan shifts what people pay for health care from premiums and out-of-pocket expenses to taxes (45 percent) or that it eliminates private health insurance companies (38 percent).

This KFF Health Tracking Poll was designed and analyzed by public opinion researchers at the Kaiser Family Foundation (KFF). The survey was conducted March 13^th-18^th 2019, among a nationally representative random digit dial telephone sample of 1,211 adults ages 18 and older, living in the United States, including Alaska and Hawaii (note: persons without a telephone could not be included in the random selection process). The sample included 292 respondents reached by calling back respondents that had previously completed an interview on the KFF Tracking poll more than nine months ago. Computer-assisted telephone interviews conducted by landline (302) and cell phone (909, including 602 who had no landline telephone) were carried out in English and Spanish by SSRS of Glen Mills, PA. To efficiently obtain a sample of lower-income and non-White respondents, the sample also included an oversample of prepaid (pay-as-you-go) telephone numbers (25% of the cell phone sample consisted of prepaid numbers) as well as a subsample of respondents who had previously completed Spanish language interviews on the SSRS Omnibus poll (n=9). Both the random digit dial landline and cell phone samples were provided by Marketing Systems Group (MSG). For the landline sample, respondents were selected by asking for the youngest adult male or female currently at home based on a random rotation. If no one of that gender was available, interviewers asked to speak with the youngest adult of the opposite gender. For the cell phone sample, interviews were conducted with the adult who answered the phone. KFF paid for all costs associated with the survey.

The combined landline and cell phone sample was weighted to balance the sample demographics to match estimates for the national population using data from the Census Bureau’s 2017 American Community Survey (ACS) on sex, age, education, race, Hispanic origin, and region along with data from the 2010 Census on population density. The sample was also weighted to match current patterns of telephone use using data from the January-June 2018 National Health Interview Survey. The weight takes into account the fact that respondents with both a landline and cell phone have a higher probability of selection in the combined sample and also adjusts for the household size for the landline sample, and design modifications, namely, the oversampling of prepaid cell phones and likelihood of non-response for the re-contacted sample. All statistical tests of significance account for the effect of weighting.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Note that sampling error is only one of many potential sources of error in this or any other public opinion poll. Kaiser Family Foundation public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

1. The Trump administration’s plan includes funding as part of a budget proposal to reduce new HIV infections by 90% by the year 2030. https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview ↩︎
2. Centers for Disease Control and Prevention, Available at https://www.cdc.gov/hiv/guidelines/index.html ↩︎
3. Mandavilli, A. (2019, March). H.I.V. Is Reported Cured in a Second Patient, a Milestone in the Global AIDS Epidemic. The New York Times. ↩︎