Key Takeaways

Understanding the health care needs and experiences of LGBT+ people in the United States is important for addressing barriers and facilitating access to care and coverage. We analyzed nationally representative data from a new KFF survey to compare the experiences of self-identified LGBT+ adults to their non-LGBT+ counterparts. Key findings include the following:

• The demographics of the LGBT+ community differ in some ways from that of their non-LGBT+ counterparts, differences that may have implications for health needs and access. Specifically, LGBT+ adults are younger, lower income, and less likely to be married.
• LGBT+ people more commonly report being in fair or poor health than non-LGBT+ people, despite being a younger population, and report higher rates of ongoing health conditions and disability or chronic disease.
• While LGBT+ people are as likely to have a usual source of care and regular provider, and use similar sites of care as their non-LGBT+ counterparts, they were more likely to report a range of negative provider experiences, including being blamed for health problems or having their concerns dismissed. At the same time, LGBT+ people were more likely to discuss certain health and social issues with their providers than non-LGBT+ people.
• LGBT+ people also more commonly report that they or a household family member has had problems paying medical bills in the past 12 months than non-LGBT+ people, and as for non-LGBT+ people, this is a challenge that sometimes impacts their ability to afford basic necessities.
• LGBT+ people’s utilization of health services compared to non-LGBT+ people varies considerably by service type. For example, LGBT+ women were less likely to report having had a recent mammogram or ever had gynecological exam than non-LGBT+ women but LGBT+ people were more likely to report having received other preventive screenings, including for sexual health.
• In some cases, LGBT+ people faced more challenging COVID-related circumstances than non-LGBT+ people, including a higher share of LGBT+ people seeking mental health care because of the pandemic.
• Smaller, but still substantial, shares of LGBT+ women report ever being pregnant compared to non-LGBT+ women, and majorities reported giving birth, though miscarriage was also a common experience.

Introduction

Understanding the health care needs and experiences of the more than 11 million LGBT people in the United States is important for addressing barriers and facilitating access to care and coverage. Studies have found that LGBT+ people experience certain health and access to care challenges at higher rates than their non-LGBT+ peers. Recognizing this, the National Institutes of Health (NIH) has identified sexual and gender minorities as a “health disparity population” to encourage and support research in this area. Health disparities among LGBT+ people can vary across the population and can intersect with factors beyond sexual orientation and gender identity to include race/ethnicity, class, nationality, and age, among other aspects of identity.

Despite some significant progress in researching these issues over the last decade, a recent study found that most population-based research still does not include measures of sexual orientation and gender identity, limiting the ability of policymakers, policy implementers, and researchers to assess national trends, disparities, and identify needed interventions. We sought to add to the knowledge base in this area by analyzing newly available, nationally representative data from the 2020 KFF Women’s Health Survey to compare the experiences of self-identified LGBT+ adults to their non-LGBT+ counterparts.

The survey included measures of sexual orientation and gender identity, as well as other demographic characteristics, and asked about a range of issues from general well-being to experiences engaging in the health system, HIV, reproductive health care, and the impact of COVID-19. The survey, conducted between November and December 17, 2020, included a nationally representative sample of 4,805 people ages 18-64 using an online probability-based panel, including 492 LGBT+¹  people and oversampled lesbian and bisexual women.²  (A breakdown of sample size by LGBT+ group is available in the appendix.) Data are representative of people who self-identified as ‘female’ or ‘male’ (regardless of sex assigned at birth) and two separate survey questionnaires were designed for these two gender groups. While we aimed to be as inclusive as possible, we were not able to obtain a large enough sample to support a separate questionnaire focused on non-binary or gender-fluid people. In addition, small sample size limits our ability to report representative estimates of experiences among transgender people.

Demographics and Family

The demographics of the LGBT+ community differ in some ways from that of their non-LGBT+ counterparts, differences that may have implications for health needs and access (Figure 1):

• LGBT+ people are younger than non-LGBT+ people. More than half (59%) are between the ages of 18-35 compared to 38% of non-LGBT+ people.
• LGBT+ people are also more likely to be low-income, with 34% having incomes below 200% of the federal poverty level (FPL)³  compared to 25% of non-LGBT+ people.
• While LGBT+ people report being employed at similar rates to non-LGBT+ people (65% v. 69%, respectively), they more commonly report that their employment is part-time (17% v. 12%, not shown in figure).
• Similar shares of LGBT+ and non-LGBT+ individuals are people of color, identify as female, and live in urban areas.

Family structure also differs for LGBT+ and non-LGBT+ people, differences which may have bearing on health and insurance coverage (Figure 2).

• LGBT+ people are less likely to be living with a partner than non-LGBT+ people (39% v. 56%), including being half as likely to be married (23% v. 48%). LGBT+ people are more likely, however, to be living with a partner to whom they are not married (15% v. 8%).
• One in five LGBT+ people (21%) are parents of children under age 18, a smaller share than non-LGBT+ adults (37%).

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Health Status

Data on the health status of the LGBT+ community reveals some of the disparities that exist for this group compared to their non-LGBT+ peers (Figure 3).

• Despite being a younger population that would typically be expected to be in better health, LGBT+ people more commonly report that their health is fair or poor than non-LGBT+ people (23% v. 14%), who are more likely to report good or excellent health (86% v. 77%).
• Among LGBT+ people, those with Medicaid coverage (compared to private insurance⁴ ), lower education, and lower incomes report fair/poor health status at higher rates than their LGBT+ peers in other groups.

Chronic Health Conditions and Disabilities

Many LGBT+ people are managing chronic conditions or living with disabilities that impact daily life, in some cases more so than among non-LGBT+ people (Table 1).

• Almost half (47%) of LGBT+ people report that they have an ongoing health condition that requires regular monitoring, medical care, or medication, a higher share than for non-LGBT+ people (40%).
  • This is particularly the case for LGBT+ people aged 45 and older, who are twice as likely to report having an ongoing health condition than younger LGBT+ people (77% v. 39%).
  • LGBT+ men and women report similar rates of an ongoing health conditions (52% and 44%, respectively. Similarly, rates of ongoing conditions do not vary between those with private insurance and those with Medicaid (48% and 51%, respectively).
• A larger share of LGBT+ people report having a disability or chronic disease that keeps them from participating fully in work, school, housework, or other activities than non-LGBT+ people (21% v. 14%).
  • LGBT+ people with Medicaid are more likely to report a disability or limiting chronic disease than LGBT+ people with private insurance (34% v.14%).

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Health Care Access

Sites of Care and Providers

LGBT+ people are as likely to have a usual source of care and report using similar sites of care as their non-LGBT+ counterparts, factors that are associated with increased use of preventive care and better health outcomes (Figure 4).

• Eighty-one percent (81%) of LGBT+ people report that they have a place they usually go when they are sick or need advice about their health, similar to non-LGBT+ people (82%) and rates increase among older LGBT+ people (96%).

• The type of location where care is received is also similar among LGBT+ and non-LGBT+ people (Figure 5). Most LGBT+ people with a usual source of care receive it at a doctor’s office (71%), though one in five (22%) obtain care at a clinic, such as a health center, urgent care center, or clinic inside a store or pharmacy. Smaller shares go to an emergency room (4%) or some other place (3%).
  • Among LGBT+ people who usually visit a health center or clinic, 39% go to a community health center or public health department and 38% go to a walk-in clinic such as an urgent care center or clinic inside a store or pharmacy.

• In addition to having a regular place to get care, most LGBT+ people (72%) have a regular doctor or health care provider they see when they are sick or need routine care, similar to non-LGBT+ people (78%) (Figure 6).
  • This share increases with age, from 65% among those 18-44 years old to 95% among those 45-65 years old but does not differ between those with private insurance and those with Medicaid.
  • Despite these high rates, 16% of LGBT+ people with an ongoing health condition that requires regular monitoring, medical care, or medication do not have a regular provider (data not shown in figure).

• About seven in ten (73%) LGBT+ people with a regular doctor report that they obtain their health care from a family or internal medicine doctor. Ten percent (10%) describe their primary provider as a physician assistant or nurse practitioner. Smaller shares see another type of provider (Figure 7).

Experiences Accessing Care

LGBT+ people report different, and in some case more challenging, experiences accessing care than their non-LGBT+ peers.

• LGBT+ people are more likely to report the following providers experiences compared to non-LGBT+ people (Figure 8). Had a provider…
  • Not believe they were telling the truth (16% v. 8%)
  • Suggest they were personally to blame for a health problem (13% v. 8%)
  • Assume something about them without asking (21% v. 11%)
  • Dismiss their concerns (29% v. 16%)
• Altogether, over one-third (36%) of LGBT+ people reported at least one of these negative experiences with a provider, compared to fewer than one in five (22%) non-LGBT+ people.
• Generally, these differences were especially apparent among LGBT+ women compared to non-LGBT+ women (data not shown).
• Those reporting mistreatment most commonly thought they were treated this way because of their age, followed by their gender, and then race/ethnicity. LGBT+ women are more likely to believe they had received poor treatment because of their gender compared to non-LGBT+ women (33% v. 18%).

While larger shares of LGBT+ than non-LGBT+ people reported negative provider experiences, LGBT+ people are also more likely to discuss certain health issues with their providers (Figure 9).

• Larger shares of LGBT+ people report having had a conversation with a provider or being asked about mental health than non-LGBT+ people (76% v. 64%), potentially reflecting higher mental health care needs in this group. Similar shares of LGBT+ people and non-LGBT+ people report having conversations or being asked about smoking (76% v. 70%) and alcohol or drug use (68% vs. 66%).
• LGBT+ people are more likely than non-LGBT+ people to have had a conversation about or been asked on a form about social vulnerability issues including housing security (26% v. 17%) and access to reliable transportation (22% v. 12%). (LGBT+ people are also more likely to discuss sexual health with their providers – see section on Sexual Health.)

Health Care Costs

LGBT+ people report having problems with health care costs at higher rates than non-LGBT+ people, including those related to medical bills and other insurance costs, potentially reflecting both lower incomes and higher health needs.

• A larger share of LGBT+ people report that they or a household family member has had problems paying medical bills in the past 12 months than non-LGBT+ people (30% v. 19%) (Figure 10).
  • This was more common among LGBT+ people ages 18-44 than ages 45-64 (33% v. 20%) and LGBT+ people in self-described poorer health (41% v. 27%), findings that may be correlated with income.
  • Thirty-five percent (35%) of LGBT+ women have had problems paying medical bills in the past two years, as have nearly one-quarter of LGBT+ men (24%).
  • Among the 30% of LGBT+ people who had trouble paying medical bills in the past 12 months, nearly six in ten (58%) say that it was due, at least in part, to the COVID-19 pandemic. (See the COVID-19 Experiences section for more details.)

Medical bills have consequences on LGBT+ people’s financial well-being, including their ability to afford basic necessities, similar to experiences among non-LGBT+ people (Figure 11).

• Among the 30% of LGBT+ people who report having trouble paying medical bills in the past 12 months, two-thirds (67%) say they used up all or most of their savings, and six in ten had to set up a payment plan with a doctor or hospital (60%) and/or have been contacted by a collection agency (59%).
• Half (52%) of LGBT+ people who had trouble paying medical bills in the past 12 months have had difficulty paying for basic necessities like food, heat, or housing, and four in ten (41%) borrowed money from family or friends.

Insurance Barriers

Even with health insurance, some LGBT+ people experience barriers or problems accessing or paying for health care (Figure 12).

• Similar to non-LGBT+ people, one in four (25%) LGBT+ people with health insurance report their plan would not cover a prescription medication, or charged high cost sharing for it, in the past 12 months; 10% say their plan stopped covering a medication they were taking; and 13% say that their plan would not cover a test or scan their doctor recommended.
• About one in four (26%) LGBT+ people with health insurance report that their plan did not cover a medical bill for themselves or a family member that they thought would be covered, or that it paid less for that service than expected. Twenty-four percent (24%) say the doctor they wanted to see was not covered by their health plan.

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Utilization of Health Services

In addition to asking about experiences with and barriers related to accessing health care, we explored LGBT+ people’s use of primary care services, including prescription drugs, wellness check-ups, and preventive cancer screenings. Utilization rates among LGBT+ and non-LGBT+ people vary considerably by service type

Prescription Drug Use

People take prescription medications for a range of reasons including to treat or manage chronic conditions and acute illnesses or to prevent pregnancy. Larger shares of LGBT+ people report taking at least one prescription medication on a regular basis than non-LGBT+ people (64% v. 51%) and as with non-LGBT+ people, prescription use increases with age (Figure 13).

General Check-ups

Regular provider visits give people an opportunity to address new, chronic, and emerging health issues, access preventive screenings, and discuss a broad range of issues with a clinician.

• While nine in ten (91%) LGBT+ people have seen a doctor or health care provider in the past two years, just three-quarters (68%) of this group has had a general check-up or well-woman visit⁵  in the past two years (Table 2). These shares are similar to non-LGBT+ people (90% and 71%, respectively).

Cancer Screenings

Use of preventive cancer screenings can lead to early identification of conditions when they are more responsive to medical interventions and potentially avert serious complications (Figure 14).

• Substantially smaller shares of LGBT+ women aged 40-64 report having had a mammogram in the past two years than non-LGBT+ women (35% v. 64%).
• LGBT+ people in the targeted screening groups report having Pap smears and colon cancer screenings in the past two years at similar rates as non-LGBT+ people (54% v. 60% and 52% v. 47%, respectively).

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COVID-19 Pandemic Experiences

The COVID-19 pandemic has impacted people’s lives across the country. In some cases, LGBT+ people have had similar COVID-related experiences to non-LGBT+ people, but in other situations, they faced more challenging circumstances.

• LGBT+ people and non-LGBT+ people reported having used telehealth at similarly low rates prior to the pandemic (16% v 12%, respectively). While experience with telehealth increased for both groups during the pandemic, it was higher among LGBT people (49% v. 34%, respectively) (Figure 15).

• LGBT+ people and non-LGBT+ people reported difficulty getting appointments (29% v. 25%) and skipping or delaying care at similar rates because of the coronavirus pandemic, including with respect to accessing preventive services (36% v. 31%), a recommended test or treatment (24% v. 18%), and birth control (6% v. 4%).
• While LGBT+ and non-LGBT+ people report skipping or delaying care at similar rates by a range of measures, LGBT+ people are more likely to report that their health condition worsened as a result of skipping care than non-LGBT+ people (22% v. 13%) (Figure 16).
• LGBT+ people also report similar rates of veering from prescription drug regimens (e.g., not filling prescriptions, cutting pills in half or skipping doses) as non-LGBT+ people (11% and 9%, respectively).

• In addition, LGBT+ people were more likely to report seeking mental health care because of the pandemic compared to non-LGBT+ people (24% v.12%), potentially reflecting separate findings that LGBT people report the pandemic negatively impacted their mental health more widely and severely than non-LGBT people.
• LGBT+ people are also more likely than non-LGBT+ people to report having to quit a job for a reason related to COVID-19 (15% v. 7%), taking time off work because of personally becoming ill with COVID-19 or quarantining (19% v. 11%), or taking time off work to care for a family member who was sick with COVID-19 or quarantining (10% v. 5%) (Figure 17).

• Among the 30% of LGBT+ people who report having problems paying medical bills in the past 12 months (see section on health care costs), 58% say that it was at least in part because of the COVID-19 pandemic, with more than a quarter (27%) saying it was due only to the impact of the pandemic alone (Figure 18).

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Sexual and Reproductive Health

STI and HIV Testing

• LGBT+ people report higher rates of testing for sexually transmitted infections (STIs) and HIV than their non-LGBT+ peers, services that are recommended for early detection, treatment, and preventing transmission. This could reflect higher rates of STIs in the community as well as greater awareness of testing (Table 3).
• Thirty-five percent (38%) of LGBT+ people ages 18-64 have been tested for an STI (other than HIV) such as chlamydia or herpes in the past two years, higher than the share of non-LGBT+ people (17%). Among LGTB+ people, rates are higher among those with Medicaid (54%) than private insurance (33%). STI testing rates among bisexual women (46%) are higher than the average (data not shown in figure).
• Thirty-seven percent (37%) of LGBT+ people ages 18-64 have been tested for HIV in the past two years, higher than the share of non-LGBT+ people (16%). Approximately six in ten LGBT+ people with Medicaid (60%) report being tested for HIV in past two years.

The survey also asked how people knew they had been tested for STIs and HIV (Figure 19).

• Among LGBT+ people who report that they have been tested for HIV or another STI in the past two years, about half say they asked to be tested. LGBT+ people are more likely to request HIV testing than non-LGBT+ people (53% v. 32%).
• Some LGBT+ people say they had been tested for HIV (16%) and STIs (16%) because they believed it was a routine part of their exam. It is possible that some in this group who believe they were tested but it wasn’t discussed may not have actually received the test. Larger shares of non-LGBT+ believe they had been tested for HIV but that it wasn’t discussed than non-LGBT+ people (24%).

Sexual Health Counseling

LGBT+ people more commonly report talking with a provider about a range of sexual health and relationship issues than non-LGBT+ people, counseling that, for most insured people, is required to be covered without cost-sharing (Figure 20).

• Among the 90% of people who have visited a provider in the past two years, larger shares of LGBT+ people report recently talking with a provider about their sexual history or relationships than non-LGBT+ people (64% v. 44%, respectively).
• LGBT+ people also more commonly report talking with providers about HIV (36% v. 22%) and other STIs (33% v. 19%) than non-LGBT+ people.
• While conversations about PrEP, a medication that prevents HIV, are relatively uncommon among both groups, they are more than twice as common among LGBT+ people than non-LGBT+ people (18% v. 8%).
• We note some key differences by gender:
  • Among LGBT+ women who have visited a provider in the past two years, bisexual women report the highest rates of conversations about sexual history (74%), HIV (30%) and other STIs (36%) with providers. Rates are generally lower among lesbian and non-LGBT+ women. LGBT+ women and non-LGBT+ women have similarly low rates of conversations about PrEP with their providers (11% and 9%, respectively).
  • Compared to non-LGBT+ men, LGBT+ men are more likely to talk to their providers about their sexual history (56% v. 34%), HIV (43% v. 22%), and other STIs (32% v. 17%). In particular, LGBT+ men are more than 3 times as likely to talk with their providers about PrEP than non-LGBT+ men (25% v. 8%).
  • Approximately two-thirds of LGBT+ (67%) and non-LGBT+ (68%) women report that they have discussed contraception with a provider in the past two years.
  

• Approximately four in ten (39%) LGBT+ women and 44% of non-LGBT+ women rate their most recent contraceptive care provider as “excellent” on all four items of person-centered contraceptive counseling.

Reproductive Health Experiences

Gynecological exams typically include cervical and breast cancer screening, education, and counseling and in some cases, LGBT+ women report lower rates of accessing this care (Figure 21). We did not assess service utilization based on sex assigned at birth/biological need for services. As such, transgender men, and others who could benefit from reproductive care, may have been excluded from these findings drawn from a base of respondents who identified as female.

• Smaller shares of lesbian women aged 18-64 report having had a gynecological visit in the past three years compared to non-LGBT+ women (59% v. 73%).
• One in five (20%) lesbian women and 12% of bisexual women say that they have never seen a doctor or nurse for a gynecological exam, which is significantly higher than non-LGBT+ women (6%).

Contraception

People use contraception for a range of reasons and sometimes for more than one reason at a time (Figure 22).

• In the past 12 months, over half of LGBT+ women ages 18-49 (56%) and half of non-LGBT+ women (51%) report using contraception to prevent pregnancy, manage a medical condition, prevent a sexually transmitted infection (STI), or some other reason.
  • Contraception use among LGBT+ women is driven by bisexual women, nearly two-thirds (63%) of whom have used it in the past 12 months (data not shown in figure).
• One in seven LGBT+ women ages 18-49 (14%) use contraception to manage a medical condition, which is nearly twice the share of non-LGBT+ women (8%).

• The majority of LGBT+ (87%) and non-LGBT+ (87%) women ages 18-64 report using contraception in their lifetime. Among LGBT+ women, this share is driven by bisexual women (Table 4).
  • Male condoms and oral contraceptives are the most commonly used methods among both LGBT+ women and non-LGBT+ women. LGBT+ women, driven by bisexual women, are more likely to report using contraceptive implants (12%) and emergency contraception (32%) than non-LGBT+ women.
  • LGBT+ women reported using an average of 3.6 different contraceptive methods throughout their lifetime, similar to the average of 3.4 methods among non-LGBT+ women.
• One in four LGBT+ women (25%), primarily bisexual women, said if they could use any type of birth control method available, they would want to use a different method than they’re currently using, compared to one in six (17%) non-LGBT+ women.

Pregnancy Experiences

Over four in ten (41%) LGBT+ women ages 18-64, including 45% of bisexual women and 19% of lesbian women, report ever being pregnant in their lifetime compared to seven in ten (71%) non-LGBT+ women (Table 5).

• Of those who report ever having a pregnancy, 83% of LGBT+ women and 92% of non-LGBT+ women report giving birth. Nearly half (46%) of LGBT+ women and 37% of non-LGBT+ women who have been pregnant report having a miscarriage.

• Over half (56%) of bisexual women and 21% of lesbian women report a time they were concerned they were pregnant when they did not want to be, compared to 42% of non-LGB women (Figure 23).
  • The top reason for both groups of women was they did not use birth control, followed by missing a pill or using birth control incorrectly, and a birth control method failure, such as a condom breaking.
  • Larger shares of bisexual women (25%) report not being confident the method they were using worked than non-LGB women (16%).

Abortion

Most women say that they know someone who has had an abortion. This is higher among LGBT+ women (68%) than non-LGBT+ women (59%). Nearly two-thirds of LGBT+ women (64%) say they have heard of a medication abortion (a pregnancy termination protocol used up to the first 10 weeks of pregnancy that involves taking two different drugs, mifepristone and misoprostol), higher than the share of non-LGBT+ women (55%) (Figure 24).

Conclusion

This brief aims to add to the evolving body of work on the health of LGBT+ communities. We find that while in many cases LGBT+ people have similar health and health care experiences to non-LGBT+ people, there are some notable differences, particularly with respect to some poorer health outcomes and negative provider experiences, as well as lower utilization of care in some cases and a higher burden of medical bills. LGBT+ people have also experienced certain COVID-era challenges at higher rates.

While data collection on LGBT+ people is improving, particularly at the federal level, it is still not standard, and as such, knowledge gaps remain, including with respect to health status, health needs, and health care access. Lack of research in this area limits the ability of those in both policy and health care sectors to address health needs and disparities within the population. Given LGBT+ people’s common experiences with stigma, discrimination, and violence in a range of environments (e.g., home, work, school, health care, etc.) and the evolving legal protections based on sexual orientation and gender identity, collecting this data is especially important in furthering goals of equity and access.

1. LGBT+ is defined to include people who identified as lesbian, gay, bisexual, transgender, or “something else” (other than straight). ↩︎
2. See the Methodology section for more details and the toplines for full question wording. ↩︎
3. The FPL for a family of four in 2020 was $26,200. ↩︎
4. Private health insurance includes insurance provided through an employer and insurance purchased individually. ↩︎
5. Survey respondents who identified as female were asked if they had had either a general check-up or a well-woman visit. All others were asked if they had had a general check-up. ↩︎

The coronavirus pandemic’s disproportionate impact on seniors and people with disabilities and chronic illnesses has brought heightened focus on the unmet need for home and community-based services (HCBS). Medicaid serves as the primary source of coverage for HCBS, which help these populations to live independently outside institutions by assisting with daily needs. In addition to determining whether to retain Medicaid HCBS policy changes adopted during the pandemic, states are currently developing plans to access an increased federal matching rate (“FMAP”) for Medicaid HCBS spending established in the American Rescue Plan Act (ARPA) of 2021. In the future, states may also be able to access increased HCBS funds proposed in the Biden Administration’s American Jobs Plan and the Better Care Better Jobs Act recently introduced in Congress.

To provide context for state considerations of policy options for the post-pandemic period and the potential use of new federal funds, this brief highlights examples of Medicaid HCBS policy changes authorized through Section 1115 demonstration waivers in seven states (Arizona, Delaware, New Jersey, New York, Rhode Island, Vermont, and Washington). Where available, we discuss waiver evaluation findings and reports that assess the impact of these policy changes. Key waiver provisions seeking to expand HCBS include the following (and are summarized in a state-by-state table in the Appendix):

• Streamline processes for determining eligibility and providing services.
• Expand financial eligibility rules to help certain enrollees afford to live in the community.
• Serve additional populations by expanding financial and/or functional eligibility rules.
• Offer new services through alternative benefit packages.

States may be unlikely to pursue new 1115 waivers to use the ARPA HCBS funds because these funds are available for states to claim for one year only (though states have until March 2024 to spend the enhanced funds). However, these examples from 1115 waivers identify policy areas that states may consider targeting through existing state plan or HCBS waiver authorities, particularly where state evaluations and experiences have found that policy changes seeking to expand HCBS access have achieved their goals.

Streamlining eligibility and enrollment processes

To provide faster access to HCBS, states have used 1115 authority to streamline processes for determining eligibility and providing services, including by authorizing benefits during a presumptive eligibility period and accepting self-attestation as verification for financial eligibility.

Authorizing benefits during a presumptive eligibility period. Presumptive eligibility is a longstanding option that allows states to authorize certain qualified entities to enroll individuals who appear likely eligible for coverage while the state processes the full application and makes a final eligibility determination. Presumptive eligibility can facilitate access to coverage and services when individuals in need of critical services also may need extra time to collect documents needed to complete a full eligibility determination. While states may allow hospitals to determine presumptive eligibility for Medicaid pathways based on old age or disability without an 1115 waiver, several states have used 1115 authority to provide presumptive eligibility (determined by non-hospital entities) for more limited populations and/or benefits to provide faster access to HCBS. For example:

• Washington uses 1115 authority to provide presumptive eligibility for both its Tailored Support for Older Adults (TSOA) and Medicaid Alternative Care (MAC) programs, which provide supportive services to older adults and their caregivers (see Appendix for program details). An interim evaluation Quarterly progress reports from 2020 indicate high proficiency for appropriate determinations of nursing facility level of care, performed primarily by local Area Agencies on Aging, for those enrolled presumptively and low percentages of enrollees determined ineligible after the presumptive eligibility period. In a recent pending waiver amendment requesting to further extend presumptive eligibility for LTSS, Washington noted that the high accuracy rate of presumptive eligibility determinations for TSOA “exemplifies the minimal risk to the state and [] federal partners.”
• Rhode Island’s waiver also authorizes HCBS benefits to new long-term care (LTC) applicants during a presumptive eligibility period while final financial eligibility determinations are pending.

Accepting self-attestation as verification for financial eligibility. States may simplify the Medicaid application process by allowing applicants to self-attest to certain financial eligibility criteria. During the COVID-19 public health emergency (PHE), some states are using Medicaid emergency authorities to allow self-attestation of eligibility requirements for applicants to Medicaid pathways based on old age or disability. States may also use 1115 authority to allow more limited populations to self-attest to financial eligibility requirements. For example,

• New Jersey’s 1115 waiver eliminates state review and instead accepts self-attestation of no asset transfers during the five-year look-back period for applicants below 100% FPL seeking LTC and HCBS. The look-back period delays the date of Medicaid eligibility for applicants who transferred assets for less than fair market value, which instead could have been used to meet long-term care needs. New Jersey conducted electronic asset verification of randomly selected applications in 2015 and 2016 and found a 0% error rate on these sampled self-attestations, concluding that “the often burdensome five year lookback process can be safely eliminated for many low-income applicants.”

Expanding financial eligibility rules

To help enrollees maintain community residence, states have used 1115 authority to modify financial eligibility rules for limited populations (though states may more generally expand financial eligibility without waiver authority). These expanded eligibility rules enable enrollees to more easily afford to live in the community rather than in nursing facilities and include:

• Establishing an income disregard that accounts for average rent (in New York). New York’s 1115 waiver applies a special income disregard that accounts for average rent when determining financial eligibility for individuals moving from institutional to community settings. An evaluation of New York’s waiver has found positive impacts among individuals transitioning out of institutional settings, including that high percentages of enrollees remained in the community.
• Increasing the asset limit for certain HCBS beneficiaries (in Vermont). Vermont uses 1115 authority to increase the asset limit for certain high-need beneficiaries receiving HCBS. Evaluation results suggest positive impacts for this population, including an increase in the percentage of participants living in home and community settings versus in nursing facilities.
• Increasing the personal needs allowance for certain HCBS beneficiaries (in Rhode Island). For enrollees transitioning from nursing facilities to the community, Rhode Island’s 1115 waiver increases the personal needs allowance, which is the amount of funds not considered available to contribute to the cost of LTC services.

Serving new populations by expanding eligibility rules

Several states use 1115 authority to expand financial and/or functional eligibility rules to serve additional populations, such as:

• Elderly and near-elderly adults (in Washington). Washington’s TSOA program creates a new eligibility pathway and benefit package for otherwise ineligible adults older than 55 who require nursing facility level of care. By serving these adults with and without unpaid caregivers, TSOA aims to delay or avoid the need for more intensive LTSS. An interim evaluation of the program suggests that TSOA has met this goal: while 24-35% of TSOA participants enrolled in regular Medicaid within 6 months of TSOA enrollment, only a very small percentage used traditional LTSS. Both TSOA caregivers and recipients expressed high satisfaction with the program, with 86-90% of recipients indicating that the TSOA program would help keep them from moving to a nursing home or adult family home.
• Young adults with disabilities (in Rhode Island). Rhode Island’s 1115 waiver covers young adults age 19 to 21 who age out of the Katie Beckett group (which provides coverage to children with significant disabilities without regard to family income) and are in need of services for behavioral health or medical/developmental diagnoses. This new pathway aims to enable children with disabilities to maintain continuity of care and remain in the community as they age into young adulthood. Issues related to continuity of care for young adults with disabilities are widespread beyond Rhode Island: for example, a recent New York Times article details how in New York, the change from “medically fragile child” to “medically fragile adult” includes lower pay rates for nurses that could result in young adults with disabilities losing care and being forced to move into nursing homes.
• Children with disabilities (in Delaware). Delaware’s 1115 waiver creates a new eligibility pathway for children with disabilities who do not meet institutional level of care criteria for the Katie Beckett pathway, but are at risk of institutionalization absent the provision of services. By providing benefits to serve these children with disabilities in the community, this new pathway could help delay or avoid the use of more costly LTSS. States may use Section 1915 (i) state plan authority to serve enrollees with functional needs that are less than an institutional level of care; however, Delaware uses 1115 authority in order to limit this population to children with incomes at or below 250% of Supplemental Security Income (SSI) ($1,985 per month in 2021).

Offering new services

While states may add services to existing benefit packages without 1115 authority, they instead may use 1115 waivers to design alternative benefit packages. For example, the MAC program created by Washington’s 1115 waiver provides an alternative benefit package to support unpaid caregivers for older adults who are otherwise Medicaid eligible. This provision supports these enrollees and their caregivers by providing additional HCBS benefits not available in the standard Medicaid benefit package (though not the full Medicaid benefit package in other respects), which in turn may help the clients they care for remain in the community. An interim evaluation report shows that MAC enrollment has been lower than anticipated (with just 251 caregiver/care-receiver pairs enrolled in MAC as of October 2020, compared to initial projections of 4,673 MAC enrollees in that month) and suggests that further outreach may be necessary to reach eligible populations. Of those who did enroll, however, both caregivers and care recipients reported high satisfaction with the MAC services provided. The report also suggests that MAC participation has reduced the occurrence of adverse health outcomes and helped enrollees delay or avoid the use of more intensive traditional Medicaid LTSS.

Looking Ahead

As the primary source of coverage for HCBS, Medicaid plays a significant role in helping states meet community integration obligations under the Americans with Disabilities Act and the Supreme Court’s Olmstead decision. While the unmet need for HCBS for seniors and people with disabilities pre-dates the COVID-19 pandemic, during the PHE states have taken a number of emergency Medicaid LTSS actions, such as HCBS benefit expansions and provider payment rate increases for HCBS. In guidance on considerations for the end of the PHE, CMS specifically encourages states to identify temporary authorities that increase access to HCBS and to consider making these changes permanent. Further, the American Rescue Plan Act provided a time-limited increase in the Medicaid FMAP for HCBS spending to fund activities beyond what is currently available in states’ Medicaid programs. States must develop plans to use these funds for expanded HCBS activities such as streamlining eligibility/enrollment processes, increasing covered services, and supporting family caregivers. The existing HCBS policy changes in Section 1115 waivers summarized in this brief may provide useful examples of areas that states could target, particularly where state evaluations and experiences have found that policies seeking to expand HCBS access have achieved their goals.

Appendix

• In many low- and middle-income countries, PEPFAR and the Global Fund are significant funders of commodities to diagnose, treat, and prevent HIV, along with country governments. But, information on their relative contributions, which is important for assessing the HIV response, is not readily available. We analyzed data from PEPFAR documents on funding for key HIV commodities in 34 PEPFAR countries to better understand the funding landscape.
• Overall, we find that funding for HIV commodities in these countries was estimated to total more than $3 billion among PEPFAR countries required to submit 2019 Country and Regional Operating Plans. Almost two-thirds was for antiretroviral drugs (ARVs) (64% or $1.95 billion), followed by lab and diagnostic products (26% or $779 million). Funding for each of the other commodity types was 6% or less.
• While PEPFAR is the largest funder of HIV efforts in the world, it was not the dominant funder overall for HIV commodities in PEPFAR countries. Country governments were the largest funder of HIV commodities (44% or $1.3 billion), followed by the Global Fund (31%), and PEPFAR (24%). Overall, South Africa’s domestic government funding accounted for 56% of all country government commodity support. When commodity funding for South Africa is removed from the analysis, the Global Fund was the top funder and PEPFAR was second.
• The main funder varied by commodity. For example, PEPFAR accounted for the largest share of funding for voluntary medical male circumcision (VMMC)-related commodities in countries with a VMMC program, and the Global Fund accounted for the largest share of funding for condoms and lubricants. While country governments accounted for the largest overall share of ARV funding, the Global Fund was the top ARV funder when South Africa was removed.
• The main funder also varied somewhat by country. The Global Fund provided the largest share of commodity funding in most PEPFAR countries (21 of 34), followed by country governments (8 of 34) and PEPFAR (5 of 34).
• As we find here, PEPFAR is not the dominant funder of HIV commodities in most of the countries where it works, although PEPFAR often funds many of the associated services needed to support the delivery and use of commodities and, as the main donor to the Global Fund, indirectly funds a larger share of commodities in PEPFAR countries. These findings could help to inform assessments of the sustainability of HIV efforts, decision-making about the most effective division of commodity funding between purchasers, and opportunities for better coordination and synergy in the future, particularly given concerns about overall HIV funding in low- and middle-income countries.

Introduction

Global HIV/AIDS programs depend on having a reliable supply of health commodities, including essential medicines and other products, to prevent, diagnose, and treat HIV. Key commodities in the HIV/AIDS response include: antiretroviral drugs (ARVs), condoms and lubricants, laboratory and diagnostic products (including rapid test kits and viral load commodities), and voluntary medical male circumcision (VMMC) supplies, among others. PEPFAR, along with the Global Fund, to which the U.S. is the largest donor, is a critical source of funding for key commodities, as well as associated services, in low- and middle-income countries (LMICs), sometimes supplementing country government funding or supporting most of a country’s effort.¹  However, information on their relative roles is not readily available. Such data are important for assessing the HIV response, particularly given concerns about overall global funding for HIV, which has declined in recent years.² 

We sought to better understand PEPFAR’s role, relative to the Global Fund and country governments, in directly funding HIV-related commodities in PEPFAR countries (as the largest donor to the Global Fund, PEPFAR indirectly funds a larger share of commodities in the countries in which it works). To do so, we analyzed data from PEPFAR’s 2019 Country and Regional Operating Plan (COP and ROP) Strategic Direction Summaries (SDS) (“COP19”).³  These are documents submitted by PEPFAR country teams, as part of their larger COP/ROP submission, which describe a country’s strategic plan for the coming year, as well as provide a framework for how the country will measure progress. The SDS includes data on funding for commodities by source. We used these data to assess the relative shares of funding by source and by commodity in the 34 countries required to develop a COP or ROP in 2019, and which provided data on commodity funding distribution (an additional 20 countries were required to submit a COP or ROP in 2019 but did not provide these data).⁴  These 34 countries represented 67% of all people living with HIV and over half (approximately 54%) of new infections globally in 2019.⁵ 

Data extraction and cleaning were conducted jointly by KFF and amfAR, and the final dataset is housed on amfAR’s site here. Data were extracted as reported in the 2019 COP/ROP SDS documents, but not validated beyond these sources. In some cases, data were presented in dollar amounts and in others, as percentages of total funding. We computed both percent and dollar values where needed; percent totals may not sum to 100%.⁶  We grouped commodities into six broad categories: ARVs; condoms and lubricants; lab and diagnostic products; other commodities; other drugs; and VMMC products (see Box). All 34 countries provided data on ARVs; 33 for lab diagnostic and products; 29 countries for condoms⁷  and lubricants; 28 for other drugs; 19 for other commodities;⁸  and 13 for VMMC commodities.⁹ 

Key Findings

Funding for HIV commodities in 34 PEPFAR countries was estimated to total more than $3 billion ($3,051,168,558) from all sources in the 2019 COP/ROPs.

• Funding ranged from $709,000 in Tajikistan to $762 million in South Africa (See Figure 1).
• 10 countries accounted for 76% of all funding for commodities.

Almost two-thirds of commodity funding was for ARVs (64%), followed by lab and diagnostic products (26%). Funding for each of the other commodity types was 6% or less. 

• Overall, ARVs accounted for 64% ($1.95 billion) of funding for all commodities in 2019 (See Figure 2). Lab and diagnostic products represented the second largest share (26% or $779 million), followed by other drugs (6% or $177 million), and condoms and lubricants (2% or $59 million).
• ARVs represented the largest share of commodity funding in almost all (29 of the 34) PEPFAR countries included in this analysis (See Figure 3).

While PEPFAR is the largest single funder of HIV efforts in the world, it was not the dominant funder overall for HIV commodities in these 34 countries. Rather, in aggregate, country governments provided the largest share of commodity funding (44%), followed by the Global Fund (31%) and then PEPFAR (24%). Excluding the South Africa program, whose funding accounts for nearly a quarter of total funding for commodities across the 34 countries and almost exclusively from domestic resources, the Global Fund was the top funder and PEPFAR was second.

• Funding from country governments totaled an estimated $1.3 billion (44%), followed by the Global Fund ($935 million or 31%), PEPFAR ($735 million or 24%), and other sources ($39 million or 1.3%) (See Figure 4).
• This is primarily due to the significant role played by the South African government in funding HIV-related commodities. In 2019, the South African government’s commodity contribution ($746 million) accounted for almost all of the country’s commodity funding (98% of $762 million), 56% of total country government commodity funding ($1.3 billion), and nearly a quarter (24%) of funding for all commodities across the 34 countries ($3 billion). With South Africa removed from the analysis, PEPFAR was the second largest funder of commodities ($729 million or 32%), after the Global Fund ($924 million or 40%) (See Figure 5).

The main funder varied by commodity. For example, PEPFAR was the largest funder of VMMC-related commodities in the group of countries with VMMC programs and the Global Fund was the largest of condoms and lubricants. In most cases, though, the order changed when South Africa was removed.

• ARVs. The largest funder of ARVs was country governments, which accounted for 45% of all ARV funding, followed by the Global Fund (33%), PEPFAR (21%), and other sources (<1%) (See Figure 6). With South Africa removed, the Global Fund becomes the largest funder (45%), followed by PEPFAR (29%) (See Figure 7).
• Condoms and Lubricants. The Global Fund was the largest funder of condoms and lubricants (38%), followed by country governments (24%), PEPFAR (22%), and other sources (15%) (see Figure 6). With South Africa removed, PEPFAR was the second largest funder (See Figure 7).
• Lab and Diagnostic Products. Country governments were the largest funder of lab and diagnostic products (44%), followed by PEPFAR (30%), the Global Fund (24%), and other sources (2.5%) (See Figure 6). Without South Africa, PEPFAR moves to the top (See Figure 7).
• VMMC Commodities. Among the 13 countries that reported funding on VMMC commodities,¹⁰  PEPFAR was by far the largest payer of VMMC-related commodities (75%), followed by the Global Fund (19%), and country governments (6%) (See Figure 6). The shares, but not order, of the distribution shifts slightly without South Africa (See Figure 7).
• Other Commodities and Other Drugs. Among the 19 countries that specified funding for other commodities in 2019,¹¹  the Global Fund was the largest funder of other commodities (48%), followed by country governments (27%), PEPFAR (22%), and other sources (3.3%) (See Figure 6). The largest funder of other drugs was country governments (54%), followed by the Global Fund (25%), PEPFAR (19%), and other sources (2.6%) (See Figure 6). (South Africa did not report funding in these areas).

• The Global Fund was the largest funder of commodities in 21 of the 34 countries, followed by country governments (8 of 34), and PEPFAR (5 of 34) (See Figure 8). The Global Fund accounted for more than half of all commodity funding in 15 of the 34 countries.
• The Global Fund also was the largest funder for each commodity type in the majority of countries, with the exception of VMMC commodities, where PEPFAR was the largest funder in most countries that had a VMMC program (See Figures 8 and 9). For example, for ARVs, the Global Fund was the dominant funder in 18 countries and PEPFAR in 7 countries. For lab and diagnostic commodities, the Global Fund was the dominant funder in 18 countries and PEPFAR in 9 countries.

Looking Ahead

HIV-related commodities play a key role in the prevention, diagnosis, and treatment of the disease. As shown above, the commodity landscape varies greatly in PEPFAR countries. This variation is likely due to a range of factors, including the context of local HIV epidemics, the evolution of the HIV response in each country, availability of funding from different sources, and the priorities of funders, including of country governments. Given the lack of a cure or vaccine for HIV and millions of people with or at risk for HIV, the importance of funding currently available commodities will continue for some time but may be more challenging in an environment of flat or declining funding.

While PEPFAR is the single largest HIV funder in the world, as we find here, it is not the dominant funder, at least not directly, of HIV commodities in most of the countries in which it works. Rather, the Global Fund and country governments play the main role. At the same time, PEPFAR often funds many of the associated services (e.g., supply chains, laboratory facilities, and health care personnel) that are needed to support the delivery and use of commodities. In addition, given that PEPFAR is the largest donor to the Global Fund, it plays a more significant indirect role in the Global Fund’s support for commodities in PEPFAR countries. Going forward, these findings could help to inform policymakers, implementers, and others as they make decisions about future directions for the HIV response, including assessments of: the appropriate balance of funding for commodities between PEPFAR and the Global Fund; coordination of commodity procurement and provision at the global and country levels; whether current arrangements are best from a sustainability perspective; and how changes in overall funding for commodities or the current payer mix, might affect continuity of services.

1. KFF, u201cThe U.S. Presidentu2019s Emergency Plan for AIDS Relief (PEPFAR)u201d fact sheet, May 2020. PEPFAR, PEPFAR 2019 Country Operational Plan Guidance for all PEPFAR Countries. ↩︎
2. Global HIV funding in LMICs has been largely flat over the years and declined between 2017 and 2019. KFF. Donor Government Funding for HIV in Low- and Middle-Income Countries in 2019, July 2020. ↩︎
3. Funding totals represent amounts reported in countriesu2019 PEPFAR 2019 COP/ROPs (u201cCOP19u201d) for implementation in FY 2020. All references to 2019 throughout this analysis refer to data presented in 2019 COP/ROP documents. The underlying source of these data varies considerably. In some cases, countries used data from previous years, while in others, the data are a result of planning and negotiations with national stakeholders and the Global Fund. ↩︎
4. Zimbabwe reports total funding need, which includes the percent covered by each funding source as well as the gap in funding. For the purposes of this analysis, we removed the percent gap in funding; consequently, Zimbabweu2019s total expenditure on key commodities is lower than what is reported in its SDS. Eswatini only reports 75% of expenditures for condoms, all of which is supported by PEPFAR. We categorized the remaining 25% as u201cOther Funder,u201d as Eswatiniu2019s SDS states u201cit is not expected that there will be a gap in condom supply because PEPFAR will continue to support the optimization of access to low-cost condoms for clients who can afford to pay for condoms while ensuring that the no-cost condoms are distributed according to mapped need.u201d Nepal only reports 66% of its expenditures for u201cOther Drugs.u201d Given that there were no further details provided about the remaining 33%, the data is considered missing and not included in the analysis. ↩︎
5. UNAIDS. AIDSinfo database, accessed May 2021. ↩︎
6. Countries whose percentage totals do not sum to 100% include Burma, Cambodia, Eswatini, Jamaica, Lesotho, Nepal, Zambia, and Zimbabwe. ↩︎
7. Most PEPFAR countries order condoms through USAIDu2019s Commodity Fund. It is possible that there may be inconsistency among countries on how condoms procured through USAIDu2019s Commodity Fund are accounted for in the SDSs; for instance, some countries may call them PEPFAR-supported procurement and others may categorize them as u201cOther.u201d We interpret the funding amounts reported in the SDSs at face value. PEPFAR, 2019 Country Operational Plan Guidance for all PEPFAR Countries. ↩︎
8. Numerous countries did not report data for u201cOther Commoditiesu201d. In some cases, the lack of data might indicate $0 expenditures. As it was not clear, we assumed that any data denoted by a u201c-u201c or u201cN/Au201d in the SDSs were true u201cN/Au201d and noted it as such in this analysis. We applied this assumption to u201c-u201c and u201cN/Au201d in other categories as well. ↩︎
9. According to the 2019 COP Guidance, PEPFAR concentrates its VMMC programs in 14 priority countries. Also, data for PEPFAR-supported VMMC procedures in these countries for 2019 is included in PEPFARu2019s online Panorama Spotlight Dashboard. Twelve of these countries provided VMMC commodity funding data in their 2019 SDSs; two countries, Kenya and Ethiopia, did not provide data on VMMC commodity funding in their 2019 SDSs. According to Ethiopiau2019s SDS, Ethiopia used non-COP resources for its VMMC program. South Sudan, while not noted as one of the 14 priority countries where PEPFAR concentrated its VMMC efforts in 2019, provided funding data on VMMC in its 2019 COP. We included South Sudanu2019s data as reported in the analysis. ↩︎
10. According to the 2019 COP Guidance, PEPFAR concentrates its VMMC programs in 14 priority countries. Also, data for PEPFAR-supported VMMC procedures in these countries for 2019 is included in PEPFARu2019s online Panorama Spotlight Dashboard. Twelve of these countries provided VMMC commodity funding data in their 2019 SDSs; two countries, Kenya and Ethiopia, did not provide data on VMMC commodity funding in their 2019 SDSs. According to Ethiopiau2019s SDS, Ethiopia used non-COP resources for its VMMC program. South Sudan, while not noted as one of the 14 priority countries where PEPFAR concentrated its VMMC efforts in 2019, provided funding data on VMMC in its 2019 COP. We included South Sudanu2019s data as reported in the analysis. ↩︎
11. Numerous countries did not report data for u201cOther Commoditiesu201d. In some cases, the lack of data might indicate $0 expenditures. As it was not clear, we assumed that any data denoted by a u201c-u201c or u201cN/Au201d in the SDSs were true u201cN/Au201d and noted it as such in this analysis. We applied this assumption to u201c-u201c and u201cN/Au201d in other categories as well. ↩︎