Poll Finding

LGBT Adults’ Experiences with Discrimination and Health Care Disparities: Findings from the KFF Survey of Racism, Discrimination, and Health

Published: Apr 2, 2024

Findings

Introduction

LGBT adults in the U.S. are a growing population who have historically experienced health disparities. Past research shows that LGBT adults face increased challenges when it comes to mental health outcomes and access to care, experiences with serious mental health issues (particularly among trans adults), their physical health (including higher rates of disability among younger LGBT adults), and barriers to accessing and affording needed care. These negative experiences often occur at higher rates among LGBT adults who are younger, lower income, women, or report chronic illness or disability (for more detail on the demographics of LGBT adults, see Appendix). The Biden administration has issued recent executive orders aimed at combatting discrimination and disparities affecting LGBT adults, however, an increasing number of states have enacted policies seeking to restrict access to certain types of care for LGBT people, with youth access to gender affirming care being particularly impacted.

This report focuses on LGBT adults’ experiences with discrimination in their daily lives and in health care settings in addition to experiences with severe mental health crises, homelessness, well-being and stress, and experiences accessing mental health care. It also looks at the relationship between experiences with discrimination and adverse mental health outcomes, and, conversely, the importance of strong, local support networks in mitigating some of these outcomes.

These findings are based on analysis of KFF’s 2023 Racism, Discrimination, and Health Survey. A previous report from the survey focused on individuals’ experiences with racism and discrimination in health care and more broadly, and the relationship of those experiences to health and well-being.

Key Takeaways

  • LGBT adults face higher rates of discrimination and unfair treatment in their daily lives compared to non-LGBT adults, including in health care settings. About two-thirds (65%) of LGBT adults compared to four in ten (40%) non-LGBT adults say they experienced at least one form of discrimination in their daily life at least a few times in the past year, including receiving poorer service than others at restaurants or stores, people acting as if they are afraid of them or as if they are not smart, being threatened or harassed, or being criticized for speaking a language other than English. LGBT adults are also twice as likely as non-LGBT adults to report negative experiences while receiving health care in the last three years, including being treated unfairly or with disrespect (33% v. 15%) or having at least one of several other negative experiences with a provider (61% v. 31%), including a provider assuming something about them without asking, suggesting they were personally to blame for a health problem, ignoring a direct request or question, or refusing to prescribe needed pain medication. Our previous report from this survey showed that among adults overall, some negative experiences with health care providers were reported at higher rates among Black and Hispanic adults compared to White adults. However, among LGBT adults these experiences appear to cut across racial and ethnic groups, with White LGBT adults reporting many of these experiences at similar rates to their Black and Hispanic peers.
  • LGBT adults are more likely than non-LGBT adults to report adverse consequences due to negative experiences with health care providers and to say they take steps to mitigate or prepare for unfair treatment when receiving care. Larger shares of LGBT adults compared to non-LGBT adults report having a negative health care experience in the past three years that caused their health to get worse (24% v. 9%), made them less likely to seek health care (39% v. 15%), or caused them to switch health care providers (36% v. 16%). Additionally, six in ten LGBT adults say they prepare for insults from health care providers or staff or feel that they need to be careful about their appearance to be treated fairly at least some of the time when seeking care, compared to four in ten (39%) non-LGBT adults who say the same.
  • Among LGBT adults, those who are lower income, younger, and women are more likely to face challenges with discrimination or unfair treatment in their daily life and while receiving health care. For example, eight in ten LGBT adults ages 18-29 and three-quarters of LGBT women (73%) report experiencing discrimination in their daily lives at least a few times in the past year, higher than the shares reported by older LGBT adults and LGBT men. Additionally, LGBT adults with household incomes below $40,000 are more likely than those with higher incomes to say they were treated unfairly or with disrespect by a health provider (41% v. 22%) and to report at least one of several negative experiences with a doctor or health care provider in the past three years (70% v. 51%).
  • Across several measures of mental health and well-being, including experiences with severe mental health crises, LGBT adults report worse outcomes compared to their non-LGBT peers. LGBT adults are more likely than non-LGBT adults to describe their own mental health as “fair” or “poor” and to report frequent worries about work, finances, politics and personal safety, as well as adverse effects of stress like problems with sleep or appetite and worsening chronic conditions. They are also twice as likely as non-LGBT adults to say they or a family member has ever experienced a severe mental health crisis that resulted in serious consequences like homelessness, hospitalization, incarceration, self-harm, or suicide (44% v. 19%). Over half of younger and lower-income LGBT adults report they or a family member experienced a severe mental health crisis.
  • Experiences with discrimination exacerbate mental health challenges for LGBT adults. LGBT adults who experienced discrimination in their daily lives at least a few times in the past year are about twice as likely as those who rarely or never experienced such discrimination to say they always or often felt anxious (65% v. 34%), lonely (42% v. 15%), or depressed (38% vs. 21%) in the past year.
  • For LGBT adults, having a strong local support network is a mitigating factor for experiences with severe mental health crises and regular feelings of loneliness and depression. LGBT adults who have at least a fair amount of friends and family living nearby who they can ask for help or support are less likely than those with fewer people in their support network to report experiences with severe mental health crises among themselves or a family member (54% v. 33%). In addition, LGBT adults with larger local support networks are less likely than those with just a few or no people in their support network to report regularly feeling lonely (25% v. 39%) or depressed (23% v. 40%) in the past year.
  • LGBT adults – including those with fair or poor mental health – are more likely than non-LGBT adults to report going without needed mental health care, with many reporting affordability and accessibility issues of these services. Nearly half of LGBT adults (46%) say there was at time in the past three years when they needed mental health services but didn’t get them, including two-thirds (68%) of LGBT adults who describe their mental health as “fair” or “poor.” Overall, LGBT adults are more than twice as likely non-LGBT adults to say there was a time when they didn’t receive needed mental health services in the past year.
  • LGBT adults are twice as likely as non-LGBT adults to report having experienced homelessness, with larger shares of Black and lower income LGBT adults reporting personal experiences with homelessness. One in five (22%) LGBT adults say they have ever experienced homelessness – twice the share of non-LGBT adults who report this. The share of LGBT adults reporting experiences with homelessness rises to four in ten among lower income LGBT adults (39%) and about one-third of Black LGBT adults (35%).

This survey’s findings underscore and enhance our understanding of the ongoing challenges LGBT adults in the U.S. face, including with respect to experiences with stigma and discrimination and poorer mental health outcomes compared to non-LGBT peers. Indeed, these findings are likely intertwined. That is, experiences of stigma and discrimination can lead to challenges with mental health, particularly at a time when LGBTQ people’s rights and access to social institutions, including health care, have been called into question and politicized. The survey finds that in several cases, these challenges are faced most profoundly by LGBT women, young people, and those with lower incomes, highlighting some groups who may benefit most from additional support and resources.

The challenges revealed in this data also identify areas where additional attention to, and policy making around, social determinants of health, provider training, non-discrimination protections, addressing stigma, and combating social isolation, could improve LGBT people’s well-being, including in terms of access to care. Federal policy making may play an especially important role in addressing discrimination and access to care, given the patchwork of access and protection at the state level.

LGBT Adults’ Experiences with Discrimination in Daily Life

About two-thirds (65%) of LGBT adults say they experienced at least one type of discrimination in their daily life at least a few times in the past year compared to four in ten (40%) non-LGBT adults. LGBT adults are consistently more likely than non-LGBT adults to report specific types of discrimination asked about on the survey, which include people acting as if they are not smart (51% v. 27%), being threatened or harassed (34% v. 12%), receiving poorer service than others in restaurants or stores (26% v. 20%), and people acting as if they are afraid of them (24% v. 11%).

LGBT Adults Are More Likely Than Non-LGBT Adults to Report Discrimination in Their Daily Lives

Across demographics including gender, income, and age, LGBT adults are consistently more likely than non-LGBT adults to report experiencing at least one form of discrimination in their daily lives at least a few times a year. For example, seven in ten LGBT adults with household incomes below $40,000 report experiencing discrimination in their daily life at least a few times in the past year compared to about half (47%) of non-LGBT adults in the same income group. Hispanic and White LGBT adults are more likely than their non-LGBT peers to report experiencing discrimination at least a few times in the past year, while there is not a statistically significant difference in the share of Black LGBT adults and Black non-LGBT adults who report these experiences.

Among LGBT adults, women and younger adults are more likely to report experiences of discrimination than LGBT men and older LGBT adults. The share of LGBT adults who report experiencing at least one type of discrimination rises to eight in ten among those ages 18-29, compared to about half of those ages 30 and older. LGBT women are more likely than LGBT men to report experiencing discrimination in their daily life in the past year (73% v. 51%). The shares of LGBT adults reporting at least one type of discrimination in their daily lives do not differ significantly across race and ethnicity or income groups.

LGBT Adults Are More Likely Than Non-LGBT Adults to Report Experiences With Discrimination

Black and Hispanic LGBT adults are more likely than their non-LGBT peers to say they experienced discrimination in their daily life and their race or ethnicity was a reason for these experiences. About half (51%) of Black LGBT adults and four in ten (44%) Hispanic LGBT adults say they experienced discrimination in the past year and their race or ethnicity was a reason they were treated this way compared to fewer non-LGBT Black adults (40%) and Hispanic adults (28%) who say the same. Few White LGBT adults (13%) and White non-LGBT adults (6%) report experiencing discrimination based on their race or ethnicity.

Black and Hispanic LGBT Adults Are More Likely Than Their Non-LGBT Peers to Report Discrimination Due to Their Race or Ethnicity

Experiences With Health Care Providers

Most LGBT adults report having positive interactions with health care providers at least most of the time. Consistent with previously reported findings among adults overall, large shares of both LGBT and non-LGBT adults who have used health care in the past three years report having positive and respectful interactions with their health care providers, with at least seven in ten saying their doctor or provider did the following at least “most of the time” during visits in the past three years: explained things in a way they could understand (81%); understood and respected their cultural values and beliefs (81%); involved them in decision making about their care (76%); and spent enough time with them during their visit (70%). A much smaller share of LGBT adults (29%) say their doctor or provider asked them about their work, housing situation, or access to food or transportation at least most of the time during visits.  Among LGBT adults, consistently large shares across demographic groups report having these positive provider interactions at least most of the time in the past three years.

Large Shares of LGBT Adults Report Having Positive, Helpful and Respectful Interactions With Health Care Providers

Despite these overall positive experiences, LGBT adults are more likely than non-LGBT adults to report unfair or disrespectful treatment by providers while receiving health care, with even larger shares among younger LGBT adults and those with lower incomes reporting these experiences. LGBT adults who have used health care in the past three years are twice as likely as non-LGBT adults (33% v. 15%) to say they were treated unfairly or with disrespect by a doctor or health care provider for any reason in the past three years. These differences hold across some demographic groups, with LGBT adults consistently more likely than non-LGBT adults to report unfair or disrespectful treatment regardless of income, gender, or age.

The shares of LGBT adults reporting unfair or disrespectful treatment include four in ten (41%) with household incomes below $40,000 who are more likely than LGBT adults with higher incomes (22%) to report unfair treatment. Among LGBT adults, those ages 18-29 are more likely than those ages 50 and over to report unfair treatment in the past three years.

One-Third of LGBT Adults Report Experiencing Unfair, Disrespectful Treatment by a Health Care Provider, Including Four in Ten Lower-Income LGBT Adults

Black and Hispanic LGBT adults are more likely than their White counterparts to report being treated unfairly or with disrespect by a health care provider because of their racial or ethnic background, but unfair treatment for other reasons cuts across racial and ethnic groups among LGBT adults. A quarter (24%) of Black LGBT adults and 15% of Hispanic LGBT adults who used health care in the past three years say they were treated unfairly or with disrespect by a doctor or health care provider in the past three years because of their racial or ethnic background compared to fewer White LGBT adults (4%). When adding in the shares who say they were treated unfairly for some other reason such as their gender, health insurance status, or ability to pay for care, the combined shares reporting unfair treatment for any reason are similar across Black (33%), Hispanic (26%), and White (33%) LGBT adults.

Notably, across race and ethnicity LGBT adults are more likely than their non-LGBT peers to say a doctor or health care provider treated them unfairly or with disrespect in the past three years because of something besides their race or ethnicity, including among Black adults (26% vs. 17%), Hispanic adults (23% vs. 13%), and White adults (32% vs. 11%).

Similar Shares of LGBT Adults Across Racial and Ethnic Groups Report Unfair Treatment by Health Care Providers, but Black and Hispanic LGBT Adults are More Likely to Attribute This to Their Race or Ethnicity

In Their Own Words: Descriptions of Being Treated Unfairly or Disrespectfully by Health Care ProvidersIn open-ended responses describing instances of unfair treatment by health care providers, LGBT adults describe being interrogated about their sex lives, having their gender identity dismissed, and being ignored or disregarded.

“Despite repeatedly refusing opioids and pain medication, I was assumed to be and treated as if I was trying to scam them into providing me with drugs. When picking up my prescribed medication at a pharmacy, I was told that it was against policy to provide me with my medication, with no further reasoning provided. When I calmly asked for more explanation, they threatened to call the police. When doctors have found out about my LGBTQIA identity, they have interrogated me about my sex life repeated.” – 26-year-old LGBT adult from Virginia

“I am a transgender woman and I still have my legal name, outside of my Gender Clinic… every other doctor I’ve gone to has used my deadname and misgendered me despite me introducing myself as my chosen name and gender.” – 18-year-old LGBT adult from New York

“A male doctor was condescending about health information that I am already well-educated on and did not explain well all of the options available to me re: birth control and family planning. I also felt insulted by a comment he made about my sexual history, which may have been directed at my bisexuality.” – 23-year-old LGBT adult from Alabama

“They acted as if I wasn’t there as if I was not human.”– 38-year-old LGBT adult from Ohio

“Seemed dismissed as a person. Just received minimal care and not any respect as a person with a health issue. Felt like just a bother to their day.”– 24-year-old LGBT adult from Tennessee

In addition to general unfair and disrespectful treatment by health care providers, six in ten (61%) LGBT adults report at least one of several negative experiences with a health care provider in the last three years compared to three in ten (31%) non-LGBT adults. Regarding specific negative experiences measured in the survey, LGBT adults are twice as likely as non-LGBT adults to report that a doctor or provider assumed something about them without asking, suggested they were personally to blame for a health problem, ignored a direct request or a question they asked, or refused to prescribe needed pain medication.

LGBT Adults Are Twice as Likely as Non-LGBT Adults to Report Negative Experiences With a Health Care Provider During Recent Visits

Lower-income LGBT adults are more likely to report negative provider experiences. Overall, seven in ten LGBT adults with household incomes below $40,000 report at least one of these negative experience with a health care provider in the past three years compared to about half (51%) of those with higher incomes. While lower income adults overall are more likely to report at least one of these negative provider experiences, among lower income adults, LGBT adults are still about twice as likely as non-LGBT adults to report at least one of these experiences (70% v. 36%).

Seven in Ten Lower-Income LGBT Adults Report Having at Least One Negative Experience With a Health Care Provider in the Past Three Years

Many LGBT adults say negative health care experiences have had consequences on their willingness to seek care and on their physical health. LGBT adults are at least twice as likely as non-LGBT adults to report having a negative health care experience – including being treated unfairly or with disrespect, a negative provider interaction, or difficulty with language access – in the last three years that caused their health to get worse (24% v. 9%), made them less likely to seek health care (39% v. 15%), or caused them to switch health care providers (36% v. 16%).

LGBT Adults Are at Least Twice as Likely as Non-LGBT Adults to Report Consequences of Negative Health Care Experiences

Reflecting these negative experiences, most LGBT adults say they take steps to try to mitigate or prepare for unfair treatment during health care visits. Six in ten LGBT adults say they prepare for possible insults or feel they need to be careful about their appearance to be treated fairly at least some of the time during health care visits compared to fewer non-LGBT adults who say the same (39%). Our previous report from the Racism, Discrimination and Health Survey found that among all adults, Black, Hispanic, Asian, and American Indian and Alaska Native adults are more likely than White adults to report these experiences. This analysis finds that these experiences cut across racial and ethnic groups among LGBT adults, with similar shares of Black (63%), Hispanic (61%) and White (60%) LGBT adults saying they have to be careful about their appearance to be treated fairly or prepare for insults during visits with health care providers at least some of the time.

Six in Ten LGBT Adults Say They Feel They Have to Be Careful About Their Appearance or Prepare for Insults During Health Care Visits

LGBT adults also express less comfort asking questions during health care visits compared to non-LGBT adults, which may have implications for the quality of care they receive. Half (50%) of LGBT adults who have used health care in the past three years say they have felt “very comfortable” asking doctors and other health care providers questions about their health or treatment during visits in the past three years, smaller than the share of non-LGBT adults who say the same (67%). While most LGBT adults – including similar shares across race and ethnicity, gender, income, age and coverage type – say they feel at least “somewhat comfortable” asking a doctor or provider these questions, one in eight (12%) say they feel “not very” or “not at all comfortable.”

LGBT Adults Are Less Likely Than Non-LGBT Adults to Say They Feel Very Comfortable Asking Doctors Questions About Their Health or Treatment

Mental Health and Well-being Among LGBT Adults

Four in ten LGBT adults describe their mental health as “fair” or “poor,” rising to over half of younger LGBT adults and those with lower incomes. Consistent with previous surveys, LGBT adults are more likely than non-LGBT adults to describe their mental health and emotional well-being as either “fair” or “poor” (39% v. 16%). LGBT adults with household incomes below $40,000 are about twice as likely as LGBT adults with higher incomes to report fair or poor mental health (55% v. 27%), as are LGBT adults ages 18-29 compared to those ages 50 and older (56% v. 24%). Across racial and ethnic groups, about four in ten Black (40%), Hispanic (35%) and White (41%) LGBT adults describe their mental health as fair or poor.

Four in Ten LGBT Adults Describe Their Mental Health as Fair or Poor, About Twice The Share of Non-LGBT Adults Who Report the Same

LGBT adults report more frequent feelings of loneliness, anxiety, and depression compared to non-LGBT adults, and experiences with discrimination exacerbate these challenges for LGBT adults. Overall, about half (54%) of LGBT adults report feeling anxious either “always” or “often” in the past year, while a third report feeling lonely (33%) or depressed (32%) at least often – more than twice the shares of non-LGBT adults who report the same. Other surveys have similarly found that larger shares of LGBT people report symptoms of anxiety and depression than non-LGBT adults.

Similar to differences reported among adults overall, LGBT adults who have experienced at least one form of discrimination in their daily lives in the past year are more likely to report feeling lonely, depressed or anxious in the past year than those who rarely or never experienced discrimination in daily life. Among LGBT adults with discrimination experiences in the past year, two-thirds (65%) say they “always” or “often” felt anxious in the last 12 months, compared to about half the share of LGBT adults who rarely or never experienced discrimination (34%). LGBT adults with discrimination experience are nearly three times as likely as LGBT adults who rarely or never experience discrimination to say they felt lonely “always” “often” in the past year (42% v. 15%) and are more likely to report feeling depressed at least often in the past year (38% v. 21%). While other underlying factors beyond discrimination may contribute to these differences, the relationship between feelings of loneliness, anxiety, and depression and experiences with discrimination among LGBT adults remains significant even after controlling for other demographic characteristics including race and ethnicity, education, income, gender, and age1 . LGBT women, younger adults, and lower income adults all more likely than LGBT men, older adults and higher income adults, respectively, to report these feelings at least often in the past year.

Similar shares of LGBT adults across racial and ethnic groups report feeling any of these ways in the past year, though White LGBT adults (61%) are more likely than Black (42%) LGBT adults to report feelings of anxiety. Structural inequities and a lack of culturally sensitive screening tools may contribute to underdiagnosis and underreporting of mental illness among people of color. Underreporting of mental health issues among people of color may also be explained by diagnostic disparities among children of color whose behavior is more likely to be characterized as disruptive or criminal rather than as a mental health issue. For more information, see KFF’s issue brief on mental health and substance use disorders by race and ethnicity.

LGBT Adults Who Experience Discrimination Are More Likely Than Those Who Do Not to Report Feeling Anxious, Lonely, or Depressed

LGBT adults are more likely than non-LGBT adults to report near-daily worry and stress over several factors, such as their work, politics, their health, and the possibility of being a victim of violence. Larger shares of LGBT adults compared to non-LGBT adults say they experienced worry or stress in the past 30 days either “every day” or “almost every day” related to work or employment (45% v. 17%), politics and current events (34% v. 19%), providing for their family’s basic needs (30% v. 14%), their health (26% v. 12%), and the possibility of someone in their family being a victim of gun violence (14% v. 6%) or a victim of police violence (9% v. 4%).

LGBT Adults Are More Likely Than Non-LGBT Adults to Report Near-Daily Worry or Stress Related to Work, Politics, Providing For Their Family, or Their Health

Eight in ten LGBT adults report experiencing adverse effects of worry or stress in the past 30 days, over 20 percentage points higher than the share of non-LGBT adults who report this. About eight in ten (84%) LGBT adults report experiencing at least one adverse effect of worry or stress in the past month compared to about six in ten (58%) non-LGBT adults. This includes a majority who report trouble falling asleep, staying asleep, or sleeping too much (72%) or poor appetite or overeating (58%). About half of LGBT adults say worry or stress has caused them to experience frequent headaches or stomachaches (47%). LGBT adults also report difficulty controlling their temper (36%), increasing their alcohol or drug use (23%), or worsening chronic conditions like diabetes or high blood pressure (16%).

About Eight in Ten LGBT Adults Report Experiencing Adverse Effects of Worry or Stress, Compared to Fewer Non-LGBT Adults

The Role of Support Networks

About half of LGBT adults lack a strong local support network, but most are satisfied with the number of meaningful connections they have with other people. Social support networks can be an important resource for mental health and well-being. About half (48%) of LGBT adults say they have “a lot” or “a fair amount” of family members or friends living near them who they can ask for help or support while the other half (52%) say they have “just a few” or “none.” These shares are similar among non-LGBT adults and among LGBT adults across demographics like race and ethnicity, gender, age, and income.

While about half of LGBT adults report having few family members and friends they can ask for support, eight in ten LGBT adults say they are satisfied with the number of meaningful connections they have with other people, compared to slightly larger shares of non-LGBT adults who say the same (87%). Among LGBT adults, large shares across race and ethnicity, gender, age and income report being either “very” or “somewhat satisfied” with the number of meaningful connections they have with other people.

About Half of Both LGBT and Non-LGBT Adults Report Having at Least a Fair Amount of Family, Friends in Their Support Network

LGBT adults are twice as likely as non-LGBT adults to report experiences with a severe mental health crisis that resulted in serious consequences; however, having a robust local support network mitigates these challenges for LGBT adults. About four in ten (44%) LGBT adults say that they or a family member has ever experienced a severe mental health crisis that resulted in serious consequences such as homelessness, hospitalization, incarceration, self-harm or suicide – about twice the share of non-LGBT adults who report this (19%). Among LGBT adults, the share who report personal or familial experiences with a severe mental health crisis rises to over half for those with incomes under $40,000 (56%) and those ages 18-29 (55%).

LGBT adults with relatively more family and friends in their support network, however, are less likely to report experiences with severe mental health crises compared to those with fewer family and friends whom they can ask for support. One-third (33%) of LGBT adults who say they have “a lot” or “a fair amount” of family or friends living near them who they can ask for support say that they or a family member has experienced a severe mental health crisis resulting in serious consequences; however, this rises to roughly half (54%) among LGBT adults who say they have “just a few” or no family and friends whom they can ask for support. Similar shares of non-LGBT adults, regardless of the amount of family and friends in their support network, report experiences with a severe mental health crisis.

For LGBT Adults, Having a Strong Support Network Mitigates Instances of Severe Mental Health Crises

For LGBT adults, having a strong support network mitigates challenges with regular feelings of loneliness and depression. LGBT adults who say they have “a lot” or a “fair amount” of nearby family and friends they can ask for support are less likely than those with just a few or no people in their local support network to report “always” or “often” feeling lonely (25% v. 39%) or depressed (23% v. 40%) in the past year.

LGBT Adults With Strong Local Support Networks Are Less Likely to Report Regular Feelings of Loneliness or Depression

Access and Use of Mental Health Services

LGBT adults are more likely than non-LGBT adults to report forgoing needed mental health care, particularly among those in fair or poor mental health and younger adults. Consistent with previous surveys, about half (46%) of LGBT adults say there was a time in the past three years when they thought they might need mental health services but didn’t get them, more than twice the share of non-LGBT adults who say so (20%).

The shares who report forgoing needed mental health services rises to two-thirds (68%) among LGBT adults who describe their mental health as “fair” or “poor” and six in ten (59%) among those ages 18-29. LGBT adults with self-reported “fair” or “poor” mental health are more likely than non-LGBT adults with fair or poor mental health to report forgoing needed mental health services (68% v. 44%). Similarly, across age groups, LGBT adults are consistently more likely than their non-LGBT counterparts to say they didn’t get needed mental health care. The shares of LGBT adults who report forgoing needed mental health services in the past three years do not differ significantly across gender, income, coverage type, or race or ethnicity.

About half (46%) of LGBT adults report receiving mental health services in the past three years, about twice the share of non-LGBT adults who report receiving such services (22%). These findings are consistent with other surveys that show LGBT adults and youth are more likely than others to utilize mental health care than their peers.

LGBT Adults Are Twice as Likely as Non-LGBT Adults to Report Forgoing Needed Mental Health Care in the Past Three Years

Affordability and accessibility of providers are reported barriers to receiving mental health care for many LGBT adults, as is the ability to find a provider who can relate to their background and experiences. Among LGBT adults who either received or tried to receive mental health services for themselves in the past three years (55% of LGBT adults overall), roughly half say that it was difficult to find a mental health care provider who they could see in a timely manner (55%), who could relate to their background and experiences (51%), who would take their health insurance (49% among those with health insurance), or that they could afford (48%).

Among those who received or tried to receive mental health services for themselves, LGBT adults are more likely than non-LGBT adults to report having difficulty finding a mental health care provider who could see them in a timely manner (55% v. 43%) or, among those with health insurance, that would take their insurance (49% v. 34%).

About Half of LGBT Adults Report Difficulty Finding Mental Health Providers Who Could Relate to Their Experiences or Provide Timely, Affordable Care

Experiences with Homelessness

Housing is a core social determinant of health, meaning that housing experiences, including quality and stability, have broad impacts on health, mental health, and well-being. Housing insecurity can foster or exacerbate mental health challenges and make it more challenging to meet health needs or other social obligations. Likewise severe mental health challenges can make addressing housing needs more challenging.

Notable shares of LGBT adults, including larger shares of Black and lower-income LGBT adults – report personal experiences with homelessness, and LGBT adults are more likely than non-LGBT adults to report having been homeless. One in five (22%) LGBT adults say they have ever experienced homelessness – twice the share of non-LGBT adults who report this (11%). The share of LGBT adults reporting experiences with homelessness rises to four in ten among lower income LGBT adults (39%) and one-third of Black LGBT adults (35%). Among Black adults, those who are LGBT are more likely than non-LGBT Black adults to report having been homeless (35% v. 19%), and lower income LGBT adults are more likely than non-LGBT adults in the same income group to report experiences with homelessness (39% v. 19%).

One in Five LGBT Adults Say They Have Experienced Homelessness, Including About Four in Ten Lower Income and Black LGBT Adults

Appendix: Demographics of LGBT adults

In this report, LGBT adults include those who identify as either lesbian, gay, bisexual, and/or transgender in a question that allows individuals to self-select as either one, multiple, or none of these options. Gender identity was measured separately from LGBT identity. Respondents could choose to describe their gender as a man, a woman, or in some other way. The LGBT men and women samples include individuals who selected that gender, including those who identify as transgender. While the sample size for LGBT individuals who selected “some other way” in the gender identity question is insufficient to report on separately, responses for these individuals are included in the total LGBT sample.

Overall, (and consistent with prior surveys) LGBT adults are younger than non-LGBT adults: about four in ten (42%) LGBT adults are between the ages of 18 and 29 compared to about one in six (16%) non-LGBT adults. LGBT adults are also more likely to have lower incomes, with about half (47%) reporting household incomes below $40,000 compared to one-third (34%) of non-LGBT adults. LGBT adults are more likely than non-LGBT adults to describe their physical health as “fair” or “poor” (26% v. 19%).

The demographics of LGBT and non-LGBT adults, however, are similar when it comes to race and ethnicity, education, and health insurance status among those under the age of 65.

Demographics of LGBT Adults

Methodology

The Survey on Racism, Discrimination, and Health was designed and analyzed by researchers at KFF. The survey was conducted June 6 – August 14, 2023, online and by telephone among a nationally representative sample of 6,292 U.S. adults in English (5,706), Spanish (520), Chinese (37), Korean (16), and Vietnamese (13).

The sample includes 5,073 adults who were reached through an address-based sample (ABS) and completed the survey online (4,529) or over the phone (544). An additional 1,219 adults were reached through a random digit dial telephone (RDD) sample of prepaid (pay-as-you-go) cell phone numbers. Marketing Systems Groups (MSG) provided both the ABS and RDD sample. All fieldwork was managed by SSRS of Glen Mills, PA; sampling design and weighting was done in collaboration with KFF.

Sampling strategy:The project was designed to reach a large sample of Black adults, Hispanic adults, and Asian adults. To accomplish this, the sampling strategy included increased efforts to reach geographic areas with larger shares of the population having less than a college education and larger shares of households with a Hispanic, Black, and/or Asian resident within the ABS sample, and geographic areas with larger shares of Hispanic and non-Hispanic Black adults within the RDD sample.

The ABS was divided into areas (strata) based on the share of households with a Hispanic, Black, and/or Asian resident, as well as the share of the population with a college degree within each Census block group. To increase the likelihood of reaching the populations of interest, strata with higher incidence of Hispanic, Black, and Asian households, and with lower educational attainment, were oversampled in the ABS design. The RDD sample of prepaid (pay-as-you-go) cell phone numbers was disproportionately stratified to reach Hispanic and non-Hispanic Black respondents based on incidence of these populations at the county level.

Incentives:Respondents received a $10 incentive for their participation, with interviews completed by phone receiving a mailed check and web respondents receiving a $10 electronic gift card incentive to their choice of six companies, a Visa gift card, or a CharityChoice donation.

Community and expert input:Input from organizations and individuals that directly serve or have expertise in issues facing historically underserved or marginalized populations helped shape the questionnaire and reporting. These community representatives were offered a modest honorarium for their time and effort to provide input, attend meetings, and offer their expertise on dissemination of findings.

Translation:After the content of the questionnaire was largely finalized, SSRS conducted a telephone pretest in English and adjustments were made to the questionnaire. Following the English pretest, Cetra Language Solutions translated the survey instrument from English into the four languages outlined above and checked the CATI and web programming to ensure translations were properly overlayed. Additionally, phone interviewing supervisors fluent in each language reviewed the final programmed survey to ensure all translations were accurate and reflected the same meaning as the English version of the survey.

Data quality check:A series of data quality checks were run on the final data. The online questionnaire included two questions designed to establish that respondents were paying attention and cases were monitored for data quality including item non-response, mean length, and straight lining. Cases were removed from the data if they failed two or more of these quality checks. Based on this criterion, 4 cases were removed.

Weighting:The combined cell phone and ABS samples were weighted to match the sample’s demographics to the national U.S. adult population using data from the Census Bureau’s 2021 Current Population Survey (CPS). The combined sample was divided into five groups based on race or ethnicity (White alone, non-Hispanic; Hispanic; Black alone, non-Hispanic; Asian alone, non-Hispanic; and other race or multi-racial, non-Hispanic) and each group was weighted separately. Within each group, the weighting parameters included sex, age, education, nativity, citizenship, census region, urbanicity, and household tenure. For the Hispanic and Asian groups, English language proficiency and country of origin were also included in the weighting adjustment. The general population weight combines the five groups and weights them proportionally to their population size.

A separate weight was created for the American Indian and Alaska Native (AIAN) sample using data from the Census Bureau’s 2022 American Community Survey (ACS). The weighting parameters for this group included sex, education, race and ethnicity, region, nativity, and citizenship. For more information on the AIAN sample including some limitations, adjustments made to make the sample more representative, and considerations for data interpretation, see Appendix 2.

All weights also take into account differences in the probability of selection for each sample type (ABS and prepaid cell phone). This includes adjustment for the sample design and geographic stratification of the samples, and within household probability of selection.

The margin of sampling error including the design effect for the full sample is plus or minus 2 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. Appendix 1 provides more detail on how race and ethnicity was measured in this survey and the coding of the analysis groups. For results based on other subgroups, the margin of sampling error may be higher. All tests of statistical significance account for the design effect due to weighting. Dependent t-tests were used to test for statistical significance across the overlapping groups.

Sample sizes and margins of sampling error for other subgroups are available by request. Sampling error is only one of many potential sources of error and there may be other unmeasured error in this or any other public opinion poll. KFF public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

GroupN (unweighted)M.O.S.E.
Total LGBT adults521± 7 percentage points
Total non-LGBT adults5,771± 2 percentage points

Endnotes

  1. A logistic regression model was conducted to test whether the relationship between discrimination experience and feelings of anxiety, loneliness, and depression among LGBT adults held after controlling for demographics including income, education, age, gender, and race and ethnicity. ↩︎

The ‘Pandemic Agreement’: What it is, What it isn’t, and What it Could Mean for the U.S.

Published: Apr 1, 2024

This brief was updated on June 18 to reflect developments at the 2024 World Health Assembly.

Member states of the World Health Organization (WHO) are in the process of negotiating a new international ‘pandemic agreement’ (also referred to as a ‘pandemic accord’ or ‘pandemic treaty’). Since 2021, member states have held a series of meetings to draft this new agreement. Earlier this year it was expected the process would culminate with a vote on a final text at this year’s World Health Assembly (WHA) in May 2024 but due to a lack of consensus on a number of articles, member states chose to extend the timeline for negotiations until next year, with an expectation that a final vote on any agreement would take place at the May 2025 WHA (potentially earlier if agreement is reached before then).

The Biden administration has supported the concept of an agreement, and has been engaged in negotiations since the process launched. At the same time, several issues have been raised by U.S. policymakers and others, including whether and how the U.S. should ultimately choose to become a party to the agreement. . Given that the negotiating timeline has been extended into next year, the outcome of the U.S. Presidential election this fall is likely to have significant implications for U.S. positions on the agreement and its participation in negotiations in 2025.  If President Trump were to be elected, for example, it is unclear if he would support an agreement, given his criticism of WHO and his move to withdraw from the organization when he was President, as well as his overall “America First” approach to international engagement.

What is the Pandemic Agreement?

The pandemic agreement is a potential international agreement currently being negotiated by the 194 member states of the WHO, including the U.S. Many governments and WHO leadership felt it was necessary to develop a new agreement to address some of the weaknesses in capacities and lack of international cooperation that occurred during the global response to COVID-19. The formal negotiation process (known as the International Negotiating Body, or INB) was launched in 2021. In the view of the WHO Director-General, there would be three key benefits to a new agreement: driving a more equitable global response, helping safeguard national health systems, and enhancing cooperation among member states during pandemics.

According to the latest publicly available draft text (dated 13 March), the overall objective of this new pandemic agreement is to help the world “prevent, prepare for and respond to pandemics.” Among the provisions included (all of which are still being negotiated) are definitions and principles, aspirational goals for improving pandemic preparedness and response capacities, supply chain and logistics, communication, and oversight and implementation for the agreement, with some of the more contested and debated provisions being financing for pandemic preparedness and response, pathogen access and benefit sharing (PABS), intellectual property rights, technology transfer and research and development for pandemic-related products. Also a topic for debate has been the inclusion of the concept of common but differentiated responsibilities (CBDR), meant to address equity concerns by asking richer countries to take on greater obligations to address common goals in pandemic preparedness and response than poorer countries.

What are possible outcomes of the agreement negotiations?

Earlier this year, it was expected there would be a vote on an agreement the 2024 WHA meeting, which occurred in May. However, given the lack of consensus on a number of issues in the agreement, member states decided they needed more time for negotiations and extended the INB’s mandate through May 2025. The next formal INB meeting is scheduled for July 2024, with additional negotiating meetings expected beyond that and into next year. There is an expectation that member states will vote on a final text of any agreement at the WHA in May 2025.

If member states vote in favor, the agreement would be adopted as one of several different types of international legal agreements allowed under the WHO Constitution. Which form it takes is the subject of ongoing negotiation at the INB, but possibilities include a “treaty”, a “regulation” or a “resolution”/”decision,” each of which has specific characteristics and implications (see Table 1).

  • Treaty: Proponents of the agreement, and most member states, have supported a “treaty” as the preferred outcome as it is expected to have the greatest influence and broadest potential scope. Indeed, the latest draft of the agreement includes text that indicates adoption and ratification as a treaty (Article 34), but this could change. However, a treaty would have the highest bar to clear in terms of votes needed for approval, subsequent ratification by a minimum number of member states to enter into force, and only would apply to member states that do ratify the treaty.
  • Regulation: If the agreement is approved as a “regulation,” in contrast, it would enter into force immediately for all member states (unless they opt-out), but this form could be seen as less influential compared to a treaty and could have some limitations on the issues it can directly address.
  • Resolution or Decision: Finally, WHO member states could choose to approve an agreement as a “resolution” or “decision”, which would essentially be a statement of support for certain principles without specific legal or other obligations for member states and would therefore be seen as the weakest and least ambitious form of agreement.
Potential Legal Forms for a WHO-Based Pandemic Agreement

What has been the U.S. engagement with and positions on the agreement so far?

The Biden Administration has been actively participating in the negotiations since the INB was formed in 2021. Co-led by the State Department and the Department of Health and Human Services, the U.S. representatives’ stated goals are to “ensure any agreement will leave all countries better prepared for pandemics, allow data and laboratory samples to be shared more quickly and transparently, and support more equitable global access to drugs, vaccines, and tests during health emergencies.” Earlier this year the U.S. supported completing negotiations and holding a vote on the agreement at this year’s WHA meeting but joined other member states in voting to extend the negotiations until next year given the lack of consensus on several issues in the text. However, Biden Administration officials have stated they are optimistic about reaching consensus eventually, and that the “contours of the agreement are in place”.

With closed-door negotiations still ongoing, information about U.S. positions on different components of the agreement is limited and may be subject to change. Statements from officials indicate U.S. support for the overall principles in the draft agreement, such as the aspirational goals for building pandemic preparedness capacities and calls for international cooperation. U.S. officials also have come out in favor of a some kind of PABS system where countries would commit to share pathogen samples and information, and manufacturers of vaccines, drugs and other pandemic-related products would “set aside a dedicated percentage of production for equitable distribution during pandemics.” In contrast, U.S. representatives have made critical comments about the idea of requiring intellectual property rights on pandemic-related products to be waived on a temporary basis during a pandemic, saying “eliminating intellectual property protections will not effectively improve equitable access during pandemic emergencies, and will in fact harm the systems that have served us well in the past”. While U.S. officials have voiced support for voluntary technology transfer goals in the agreement, they have been critical of including language that requires mandatory technology transfer. At recent INB meetings, U.S. officials have voiced opposition to the common but differentiated responsibilities (CBDR) concept and argued against creating a new pooled funding mechanism for pandemic preparedness and response through the agreement.

What objections are being raised in the U.S. about the agreement, and is there evidence supporting these objections?

Some U.S. policymakers and observers have raised objections to the agreement in part or in full. Below are some of the commonly expressed objections, and available evidence regarding the objections:

  • Concerns about U.S. sovereignty and/or ceding authority to WHO. Some Republican members of Congress have expressed concerns that an agreement would threaten U.S. sovereignty and could cede power to WHO. However, regardless of which type of instrument is ultimately adopted, an agreement would not change WHO’s power or member state sovereignty. WHO itself is not to be a party to an agreement, but rather its role is to provide a forum for the negotiations held by member states themselves. The current draft (Article 24) makes this point explicitly, saying the agreement “should not be interpreted” as providing WHO with any authority over domestic laws or policy. There is no mechanism included or possible for punishing member states for not meeting the goals of the agreement. Biden administration representatives involved in the negotiations have similarly stated that an agreement would not provide WHO with “…any authority to direct U.S. health policy or national health emergency response actions.” In addition, governments can choose not to be a party, opt out, or register reservations for any agreement. The U.S. government has regularly submitted reservations to other international agreements regarding federalism and its obligations, including to the WHO-based IHR revision approved in 2005.
  • Concerns about financial burden on U.S. taxpayers and/or U.S. companies. Some Republican lawmakers have expressed concerns than an agreement would require U.S. contributions, placing a financial burden on U.S. taxpayers. In addition, some lawmakers and pharmaceutical industry groups have raised concerns that an agreement would require contributions from U.S. pharmaceutical companies involved in producing pandemic-related products (such as tests, treatments, and vaccines), placing an undue financial burden on those companies. At this time, there is no language in the draft agreement text requiring contributions from member states such as the U.S. However, the text does propose (Article 20) a “Coordinating Financial Mechanism” to support global pandemic preparedness efforts, which would include a “pooled fund” drawing from several sources including voluntary contributions from governments. It also includes language (Article 12) creating a system for pathogen access and benefit sharing (PABS), for which manufacturers of pandemic-related products such as pharmaceutical companies may be expected to pay annual contributions (amounts not specified) to support the PABS system and would be expected to provide WHO (or another mechanism for global sharing) a 10% share of their production of relevant diagnostics, therapeutics, or vaccines at no cost plus an additional share (10%) at reduced prices during pandemics. Current draft language (Article 12) also proposes that manufacturers can make further voluntary, non-monetary contributions “such as capacity-building activities, scientific and research collaborations, non-exclusive licensing agreements, arrangements for transfer of technology and know-how.”
  • Concerns about intellectual property rights, and implications for U.S. pharmaceutical company innovation and development of pandemic-related products. S. lawmakers from both parties, along with pharmaceutical industry groups, have raised concerns that an agreement could “undermine” intellectual property (IP) rights and pharmaceutical innovation by requiring companies to “give away” IP protections on pandemic-related products they develop, thereby reducing incentives to invest in research and development of such products. At this time, the revised draft text of the agreement does not require companies to give up IP protections. One section (Article 11) recommends countries and companies consider supporting “time-bound waivers of intellectual property rights” in order to speed or scale up manufacturing of pandemic related products but the preamble of the current draft recognizes “protection of intellectual property rights is important for the development of new medical products,” while also recognizing concerns about IP on prices of those products.
  • Concerns about transparency of U.S. positions on the agreement provisions and its adoption. Civil society groups and others have raised questions about the transparency of U.S. engagement with the agreement negotiations, and the lack of access to draft negotiating texts. While throughout the process an official draft negotiating text has been released on only a few occasions, this is in large part due to the multiple parallel closed-door negotiations that took place earlier focusing on different sections of the agreement, resulting in a lack of an “interpretable” text given the amount of edits being suggested by member states. In addition, policymakers and others have criticized the U.S. negotiators for not being transparent about whether they will seek ratification of the agreement through the U.S. Senate, allowing a role for Congress in its consideration, or seek to approve an agreement solely through Executive Agreement. While Senate ratification followed by Presidential signature is the formal process by which treaties are ratified under the U.S. Constitution, the U.S. President has the option of acceding to a treaty/agreement through executive action alone, without the advice and consent of the Senate.1  In fact, the great majority (estimated at over 90%) of all U.S. international legal agreements are approved via executive action rather than formal Senate approval.

A few other concerns have been raised about the agreement, for which there is little evidence. For example, some Republican members of Congress have raised a concern that the agreement would direct U.S. tax dollars to be used to fund abortion overseas. However, there is no evidence – in statements from participating governments, the WHO, or in the text of the draft itself – indicating funds associated with agreement are meant to or could be used in support of abortion, which in any case is not an activity linked to the pandemic preparedness capacity-building that is the subject of the agreement. Further, U.S. law and current policies have long prohibited U.S. foreign assistance from supporting abortion overseas. Another concern raised by some Republicans and other stakeholders is that China has undue influence at WHO and therefore the validity of any agreement negotiated under WHO is compromised. The origin of the agreement can be traced back as an initiative of primarily European member states rather than China, and China’s role has been that of one of many member states rather than a controlling force shaping negotiations.

Looking Ahead

While agreement has been reached on some articles of a draft pandemic agreement, there is also much that remains to be determined in terms of the specific wording and content and indeed whether an agreement will be reached at all. Member states remain engaged in rounds of negotiations and much could change between now and a final version of the agreement. The expectation is that the negotiations will conclude in 2025, and given that U.S. elections will be held in November 2024 there remains some uncertainty about the future of U.S. engagement. This is especially true if President Trump were to be elected, given his prior administration’s history of speaking out against WHO and moving to withdraw the U.S. from WHO membership, as well as his more general “America First” approach to international engagement. With Republican lawmakers and associated groups echoing those calls to withdraw U.S. support for WHO, U.S. engagement with and approval of any future agreement could be very different depending on the 2024 electoral results.

  1. For further information on the process and implications of U.S. international treaty adoption, see reports from KFF and Congressional Research Service. ↩︎

Variability in Payment Rates for Abortion Services Under Medicaid

Published: Mar 28, 2024

Issue Brief

Figure 2 was updated on June 3, 2024 to add reimbursement amounts for mifepristone and misoprostol in Washington.

Key Takeaways

  • There is tremendous variability in how much states reimburse for abortion services in states that use state funds to pay for abortions for their Medicaid enrollees (global rates for medication abortion: $162 (RI) to $665 (NM), D&C procedures: $146 (WA) to $1,000 (NY), D&E procedures: $248 (WA) to $1,300 (NY)). IL reimburses $1,920 for a D&E procedure, which is a global payment that includes all other services provided with the procedure.
  • Although clinical care is more complicated after the first trimester, reimbursement rates do not increase significantly to reflect the increased complexity and higher costs associated with abortion care later in pregnancy (median reimbursements: $334 for D&C vs. $570 for D&E).
  • In recent years, some states, such as Illinois, New York, New Mexico, and Maryland have significantly boosted their Medicaid reimbursement rates to support abortion access in their states in the face of abortion bans and restrictions in states across the nation. For example, six states have more than doubled their reimbursement rates for D&C procedures and five states for D&E procedures since 2017.

Medicaid is a joint federal and state program and Medicaid payment rates, which are set by the states, have been the focus of policy attention since its early days. Generally speaking, Medicaid reimbursement rates have historically been lower than those paid by Medicare and are even lower relative to private insurance rates. These lower rates have been cited as a disincentive to Medicaid provider participation, which limits the pool of providers willing to serve Medicaid enrollees and constrains their access to care.

Under Medicaid, payment for abortion services has been further complicated by the federal Hyde Amendment, which has banned the use of any federal funds for abortion since 1977, only allowing exceptions for pregnancies that endanger the life of the pregnant person, or that result from rape or incest. In 19 states and the District of Columbia where abortion is not banned, Medicaid programs do not pay for any abortions beyond the Hyde exceptions, meaning that low-income pregnant enrollees seeking abortions have to pay for the services out-of-pocket or rely on donations from abortion funds to help cover the costs. Since the Dobbs decision overturning Roe v Wade, 14 states have banned abortion with only very limited exceptions and nearly all the abortion providers in those states have either closed their services or moved to other states.

Currently, 17 states use their own state funds to pay for abortions for women with Medicaid in circumstances beyond the federal limitations set in the Hyde Amendment and abortion remains legal in these states (Figure 1). Unlike other services used by Medicaid enrollees in which the costs of care are divided between the federal and state government, the states bear the full cost of abortion care.

Women Covered by Medicaid in 19 States & DC Where Abortion Is Not Banned Have Extremely Limited Abortion Coverage Due to Hyde Amendment

Currently, 44% of reproductive age women with Medicaid coverage live in states that use their own funds to pay for abortion services for Medicaid enrollees in circumstances beyond the federal Hyde limitations. A fifth (21%) of women with Medicaid coverage live in a state where abortion is banned, and a third (35%) live in a state where there is no ban, but abortion coverage is currently restricted by the Hyde Amendment.

In research conducted before the Dobbs decision, even when Medicaid does reimburse for abortion services, providers have reported lower reimbursement rates from Medicaid compared to self-pay. For example, a 2020 study reviewed 2017 Medicaid and Medicare physician fees schedules for dilation and curettage (D&C) and dilation and evacuation (D&E) procedures for 45 states and D.C. They found median Medicaid reimbursement rates for a first- and second-trimester abortion would cover 37% and 41% of what a self-pay patient would be charged for the procedure, respectively. The study did not address the fees for abortions after the second trimester.

To understand the state of Medicaid payment for abortion services post-Dobbs, KFF researchers reviewed Medicaid physician fee schedules for medication and procedural abortions in states that do not ban abortion, including both states that use state funds to pay for abortions for Medicaid enrollees and states that only pay for abortions in the cases of pregnancies resulting from rape, incest, or life endangerment. The reimbursement rates presented are for fee-for-service (FFS) claims, as managed care rates are not typically publicly available. While many pregnant people covered by Medicaid are enrolled in managed care organizations (MCOs), FFS rates are an important window for understanding reimbursement levels, and in many states, the FFS rates are the minimum payment level for MCO plans. The reimbursement rates presented in this brief are for non-facility (e.g., outpatient clinics or physician’s offices) provider-only rates (e.g., excluding any facility rates) since most abortions are performed outside of a hospital setting. Some states, such as Massachusetts and Connecticut, have different reimbursement rates for freestanding clinics providing family planning and abortion services, which are often higher than provider fee schedule rates, and those rates were used when available. Some states use supplemental payments and additional facility fee payments when they reimburse providers (e.g., California and Oregon), but these are not always posted and are not reflected in this analysis.

Some states use a bundled reimbursement for abortion services where services provided with the abortion are included in the bundled payment rate, while other states use unbundled billing and providers can bill for all additional services provided with the abortion. Other services often billed for on the day of the abortion in states that use unbundled codes may include an ultrasound, medication administration, a nerve block, and Rh testing, which are outlined in coding guides developed by the Reproductive Health Access Project for manual vacuum aspiration abortion and medication abortion. Median reimbursement amounts for each of these services from state Medicaid physician fee schedules are reported below.

Medication Abortion

In 2023, medication abortion accounted for 63% of all abortions. The two-drug regimen is FDA approved to terminate pregnancies up to 10 weeks in the U.S. Despite the wide use of medication abortion, fewer states publicly report reimbursement rates for medication abortion than for procedures. Medication abortion can be billed using three separate procedure codes and often all three codes are billed at the same time. There are codes for mifepristone/Mifeprex (S0190), misoprostol (S0191), as well as a global medication abortion code (S0199) that includes all associated services and supplies (e.g., patient counseling, office visits, confirmation of pregnancy by HCG, ultrasound to confirm duration of pregnancy, ultrasound to confirm completion of abortion). However, not all states reimburse for all three of the codes for medication abortion. States typically take two different approaches to reimburse for services provided to patients that receive medication abortion: (1) a bundled global payment using the global medication abortion code (S0199) in addition to the medications; or (2) payment for separate services, like ultrasounds and Rh testing, in addition to the medications. Sixteen states that use state funds to pay for abortion services for Medicaid enrollees list reimbursement for at least one of the three medication abortion codes, with 12 reimbursing for the global medication abortion code, 14 reimbursing for mifepristone, and 14 listing reimbursement for misoprostol. The median Medicaid reimbursement for the global medication abortion code (S0199) is $448, ranging from a low of $81 in Rhode Island to a high of $570 in New Mexico (Figure 2). The median reimbursement for mifepristone is $78, ranging from a low of $43 in Washington to a high of $99 in Maine. The median reimbursement for misoprostol, a drug that is used in other obstetric procedures, is $1 and ranges from $1 to $5. If the median amounts for all three medication abortion codes are summed, the median reimbursement for medication abortion is $527. However, the range across states is quite large, from $162 in Rhode Island to $665 in New Mexico.

While most states that use their own funds to pay for abortion services for Medicaid enrollees list reimbursement rates for medication abortion, only half of states that follow Hyde restrictions list reimbursement rates for medication abortion and median reimbursement in these states is substantially lower (see Appendix Figure 2).

Fee-For-Service Reimbursement for Medication Abortion in States That Cover Abortion Services for Medicaid Enrollees

For the states that do not used the bundled code for medication abortion, the rates for the two drugs range from $68 in Alaska to $91 in New Jersey. In these states, providers may bill for other services — such as an office visit, an ultrasound, or Rh testing – which could potentially add hundreds of dollars to the amount reimbursed, as shown in Table 1.

Median Fee-For-Service Reimbursement Amounts for Services Typically Billed with Unbundled Medication Abortion in States That Cover Abortion Services for Medicaid Enrollees

Of note, these rates are for medication abortion provision in outpatient clinics or physician’s office. Currently, approximately 16% of all abortions are medication abortions provided through telehealth. This report does not specifically address the reimbursement rates for these services which are likely different since they do not include components of care such as the ultrasound.

D&C Procedures

Dilation and curettage (D&C) is a common abortion procedure that can be used up to approximately 16 weeks of gestation. Medicaid physician fee schedules for fee-for-service reimbursement rates were published online for D&C procedures in all 17 states that use state funds to reimburse for abortion services for Medicaid enrollees (Figure 3). The median reimbursement for a D&C procedure in these states was $334, ranging widely from $146 in Washington to $1,000 in New York. Some states have substantially boosted their payment rates in recent years, notably, NY, IL, CT, NM, MD and NJ have more than doubled their payment rates since 2017 (Figure 3). Nonetheless, in many states, the increases have been quite modest over the past 7 seven years. In states that only reimburse for abortions in cases of pregnancies resulting from rape, incest, and life endangerment, payment rates were considerably lower (see Appendix Figure 1).

Fee-For-Service Reimbursement for D&C Procedures in the States That Cover Abortion Services for Medicaid Enrollees

Other services may be billed and reimbursed on the day of a procedural abortion, which could include an ultrasound, medication administration like lidocaine and methergine, or a nerve block for pain, as well as Rh testing and Rh immunoglobulin administration. Not all states reimburse for all of these extra services, and not all providers may necessarily be billing for all the possible services (Table 2). Some states like Illinois and New Mexico reimburse the abortion procedure (59840 and 59841) as a bundled code and will not pay for other related services when these codes are billed. Therefore, Illinois and New Mexico were removed from the calculations in the table below detailing median amounts for other services that may be provided on the day of the abortion.

Median Fee-For-Service Reimbursement Amounts for Services Typically Billed with a D&C Procedure in States That Cover Abortion Services for Medicaid Enrollees

D&E Procedures

For a dilation and evacuation (D&E) procedure, which is often used in the second trimester, the reimbursement rates similarly varied widely by state (Figure 4). In states that fund abortion services for Medicaid enrollees the median reimbursement for a D&E procedure was $570, ranging from a low of $248 in Rhode Island and Washington to a high of $1,920 in Illinois. States that substantially increased D&C rates from 2017 to 2024 also significantly increased D&E rates, notably Illinois increased reimbursement rates for D&E by 860% and NY and NM more than doubled their rates.

Fee-For-Service Reimbursement for D&E Procedures in the 17 States That Cover Abortion Services for Medicaid Enrollees

Similar to D&C procedures, the median reimbursement for D&E procedures in states that pay for abortions for Medicaid enrollees is higher than in states that only cover abortions in cases of rape, incest, and life endangerment (see Appendix Figure 2). Given that D&E procedures are typically provided later in pregnancy, it is striking that some states are reimbursing the same amount or just slightly higher for this more complicated procedure than a D&C, which is typically done earlier in pregnancy. Additionally, it seems that some states have not raised their Medicaid abortion reimbursement levels since at least 2017 (California and Hawaii) although these states are anticipated to increase their payment rates in the near future.

Like D&C procedures, providers can often bill for other services provided with the D&E procedure, such as ultrasounds, medications, nerve blocks, and the office visit, if the code is not a bundled code (Table 3). Similar to D&C procedures, Illinois and New Mexico use bundled payments for D&E procedures that include all other services provided with the D&E procedures and, therefore, are not included in the calculations in the table below.

Median Fee-For-Service Reimbursement Amounts for Services Typically Billed With a D&E Procedure in States That Cover Abortion Services for Medicaid Enrollees

More than half of reproductive aged women with Medicaid live in states where abortion is either banned or the cases under which Medicaid will cover an abortion are extremely limited. Medicaid enrollees living in these states may have to rely on abortion funds or help from family and friends to pay for their abortion services, or they may forgo getting services altogether. In the Guttmacher Institute’s survey of abortion patients conducted between June 2021 and July 2022, they found 22% of abortion patients living in abortion restrictive states relied on financial subsidies from abortion funds or clinic discounts to pay for their abortion compared to 11% of abortion patients living in abortion-rights protective states. In the year after Dobbs, abortion funds reported a spike in requests for financial support to access abortions, but due to an increase in demand and costs and a decrease in donations, some abortion funds have had to significantly reduce support. The longer someone has to wait to receive abortion services, the more expensive the services become for those who have to pay out of pocket. Conversely, the Guttmacher Institute found that more than four in ten people obtaining abortions in protected states used Medicaid to cover the cost of their abortion, underscoring the importance of Medicaid access in states where the provision of abortion remains legal.

The costs of providing abortions has also grown in all states as the costs of medical equipment and personnel increase annually. In addition, there are specific expenses associated with providing abortion care with which other outpatient clinics do not have to contend. Abortion clinics have added security costs to keep their staff and patients safe from anti-abortion activities, such as extra security guards, cameras, staff background checks, and bulletproof windows. Increased safety concerns and costs have made it difficult to retain their workforce. All of these aspects of providing abortion care make adequate reimbursement for abortion services an even more important consideration if the abortion provider network is to be sustained in states where abortion is not banned.

On the Horizon

A few states have made efforts in recent years to bump up their reimbursement rates for abortion services, most notably New Mexico, New York, and Illinois. These higher payments could increase abortion providers’ willingness to participate in Medicaid, potentially reducing the financial barriers experienced by people with lower incomes who have to pay for their abortion out-of-pocket or rely on financial assistance from abortion funds. However, despite the increased complexity of D&E procedures, the Medicaid payments are not substantially higher than reimbursements for first trimester D&C procedures. And while reimbursement for care after the second trimester is not addressed in this report it likely represents an even more complex procedure and higher costs for providers.

California has recently proposed increasing Medi-Cal reimbursement rates for both abortion procedures and medication abortion to $1,150 regardless of method, which would be the highest reimbursement for medication abortion across all states. However, in other states, the lack of adequate Medicaid reimbursement for these services may further exacerbate reproductive access inequities for people with low incomes.

In states where abortion remains legal, there has been a sizable increase in the number of abortions. Adequate Medicaid reimbursement for both procedural and medication abortions can improve the financial stability of clinics in these states. It can also potentially increase the number of providers who can serve patients with Medicaid coverage as well as other patients seeking abortions both in-state and from states where abortion is banned or restricted.

Appendix

Fee-For-Service Reimbursement for D&C Procedures in States That Only Reimburse for Abortions in Cases of Rape, Incest, and Life Endangerment
Medicaid Reimbursement for Second Trimester Procedural Abortions (D&E) in States That Only Reimburse for Abortions in Cases of Rape, Incest, and Life Endangerment
Medicaid Fee-For-Service Physician Fee Schedule Reimbursement Amounts for Abortion Procedures, 2017 to 2024
Medicaid Fee-For-Service Physician Fee Schedule Reimbursement Amounts for Medication Abortion, 2024

SUD Treatment in Medicaid: Variation by Service Type, Demographics, States and Spending

Published: Mar 28, 2024

Substance use disorders (SUDs), including opioid and alcohol use disorders (OUDs and AUDs), are a major public health issue affecting millions of Americans. SUDs contribute to a growing number of deaths, with alcohol-induced and opioid overdose fatalities rising sharply in recent years, especially during the pandemic. Opioid overdose deaths grew by 63% during the pandemic, to 81,051 in 2022, and alcohol-induced deaths increased by 31%, to 51,244 in the same year. Despite this, SUDs often go undiagnosed, unrecorded and untreated in healthcare settings.

As a dominant payer of behavioral health services, Medicaid can be a lever to expand access to a range of behavioral health services, including treatment for SUD. This analysis examines Medicaid claims data from 2020 to understand clinically-identified rates of SUD (referred to as diagnoses throughout the brief) as well as treatment patterns across SUD services, how treatment rates vary across groups of Medicaid enrollees and states and spending among Medicaid enrollees aged 12-64 who have a diagnosed SUD. Although claims data provide the clearest picture of the use of Medicaid-covered services among enrollees, they may exclude treatment for enrollees in some circumstances, such as when services are provided by Indian Health Services, schools or as part of bundled payment rates (see Methods for more details).

Key takeaways include:

  • Claims data show that 7.2% of Medicaid enrollees aged 12-64 have a diagnosed SUD. This may underestimate prevalence of SUDs because screening/referral practices vary and SUD diagnoses often go unrecorded without treatment. For example, data from the 2020 National Survey on Drug Use and Health, shows that 18% of Medicaid enrollees 12-64 have a SUD as NSDUH may capture undiagnosed SUDs. As a result of lower diagnosis rates in claims data, estimates of treatment rates using claims data might appear higher than they really are since they do not account for the total number of enrollees with SUD.
  • Nearly three-quarters of those with a diagnosed SUD in claims data used substance use treatment or supportive services in 2020, but there are wide variations across service type. For example, treatment rates for counseling/therapy and medication treatment were higher than other service types. Medication treatments rates are much higher for those diagnosed with OUD (63%) than those with AUD (10%), although medication treatment is recommended for both (see Box 1).
  • Enrollees who are Black, Hispanic and Asian as well as youth and young adults have lower overall SUD treatment rates than other groups. Only 4 in 10 Black enrollees with diagnosed OUDs received medication—a treatment rate substantially lower than their White counterparts (nearly 7 in 10). Youth and young adults have lower SUD treatment rates across most SUD services compared to people aged 27 to 44, particularly for medication. About 12% of youth with diagnosed OUD receive medication treatment, compared to 63% overall.
  • Substantial state-level variation exists in SUD treatment overall and by specific service. Treatment rates across states show wide variation, with up to 50 percentage point differences in treatment rates for some services.
  • Spending for enrollees with an SUD diagnosis is twice as much as those without a SUD (about $1,200 vs. $550 per month on average).

Treatment is key to addressing SUDs and reducing overdoses, deaths and other health or social complications. However, the rates at which Medicaid enrollees receive treatment can vary due to a wide range of factors including the availability and capacity of the behavioral health workforce and treatment facilities, provider participation in Medicaid and Medicaid coverage policies for SUD treatment services. In addition, treatment rates may be affected by the shortage of a diverse and culturally competent workforce as well as personal beliefs and societal stigmas. Understanding variations in treatment rates, particularly in areas or populations with lower rates, can help inform policy options to address SUD.

What are the rates and characteristics of Medicaid enrollees with a diagnosed SUD?

Overall, 7.2% of Medicaid enrollees have a diagnosed SUD in 2020 Medicaid claims data. SUDs can include alcohol or opioid use disorders, but can also include many others such as marijuana, stimulant and hallucinogen use disorders. Because OUD and AUD are the most commonly diagnosed SUDs in Medicaid claims data, and they account for over 80% of all alcohol and drug deaths, this analysis focuses on those conditions specifically as well as SUD overall (which includes all types). Medicaid claims data may underestimate the prevalence of SUDs because screening/referral practices vary and SUD diagnoses often go unrecorded without treatment. For example, data from the 2020 National Survey on Drug Use and Health shows that 18% of Medicaid enrollees 12-64 have a SUD as NSDUH may capture undiagnosed SUDs.

Medicaid enrollees who are White, American Indian and Alaska Native (AIAN), male or older than age 26 have higher rates of diagnosed SUD. These patterns are also generally consistent across OUD and AUD, with one exception. For AUD, diagnosis rates are highest among the oldest age group (45 to 64), whereas diagnosis rates for OUD are highest for people aged 27 to 44 (Figure 1).

Rates of Diagnosed Substance Use Disorders Among Medicaid Enrollees

What SUD services do Medicaid enrollees diagnosed with SUD receive?

Substance use treatment can be provided in a variety of settings and may include different treatment modalities, medication, and supportive services. For descriptions of these treatments and service types, see Table 1 below. Self-help treatments, such as Alcoholics Anonymous (AA) and Narcotics Anonymous (NA), may also play a role in treatment but are not included in this analysis.

Substance Use Disorder treatment or supportive services can be delivered through a variety of services and settings

Nationally, approximately three-quarters (74%) of Medicaid enrollees with diagnosed SUDs received treatment or supportive services in 2020. Counseling/therapy, medication and other services (including screening/assessment) have the highest utilization rates. A smaller share (19%) of enrollees diagnosed with SUD receive inpatient or residential services, with the lowest share receiving partial hospitalization or intensive outpatient services (8%). Supportive services are used by about one in seven enrollees (Figure 2). These estimates exclude the use of some services in states where certain providers have the option to bundle services or use a single code to bill for multiple services. They also exclude services for which providers did not directly bill Medicaid, such as those provided through Indian Health Services, free clinics, schools or through self-help groups such as AA and NA.

About three-quarters of Medicaid enrollees diagnosed with a substance use disorder received some type of treatment or supportive service in 2020

Medicaid enrollees diagnosed with an OUD generally have higher treatment rates than those with AUD, with the widest variation for medication treatment. Approximately 2.9% of enrollees have a diagnosed OUD and/or 2.6% have a diagnosed AUD (Figure 1). Enrollees diagnosed with OUD tend to have higher treatment rates than those diagnosed with AUD. Variation is most pronounced in medication treatment—with 63% of those with diagnosed OUD receiving medication treatment compared to 10% for AUD (Figure 2). This wide difference in treatment rates exists even though medications for both OUD and AUD are effective and recommended (Box 1). While rates of medication use for AUD are low across payers, progress has been made in increasing OUD medication rates within Medicaid. However, a substantial gap remains—with about one-third of Medicaid enrollees diagnosed with OUD not receiving medication treatment. Several factors may contribute to the OUD medication treatment gap, including difficulty filling buprenorphine prescriptions at pharmacies, low provider prescribing, state and federal policies as well as a number of other factors.

Box 1: Medication Treatment for SUD

Understanding Medication Treatments for Opioid Use Disorder (OUD): Medication treatment is recognized as a core component of OUD treatment.

  • Approved Medications: Three medications are FDA approved to treat OUD: methadone, buprenorphine and naltrexone. Methadone and buprenorphine are controlled substances. Methadone was introduced in the 1960s and is only distributed through federally registered opioid treatment programs (OTP). Buprenorphine—a controlled substance—has been approved for OUD treatment since 2002. Other medication treatments are also sometimes used.
  • Clinical Guidelines: Pharmacotherapy is recommended for most individuals with OUD, including some adolescents and pregnant women, with some modifications. Both methadone and buprenorphine are acknowledged for their high efficacy in treating OUD. 

Understanding Medication Treatments for Alcohol Use Disorder (AUD): Medication treatment is recognized as a core component of treatment for many people with AUD.

  • Approved Medications: Three medications are FDA approved to treat AUD: disulfiram, acamprosate and naltrexone. Disulfiram has been around the longest, since the 1950s and other AUD medications were not approved until the 1990s or later. Other medication treatments are also sometimes used.
  • Clinical Guidelines: Pharmacotherapy is recommended for many people with moderate or severe AUD and treatment recommendations have strengthened in recent years. Current research is considered insufficient to recommend medication treatment for adolescents and pregnant women. Naltrexone and acamprosate are acknowledged for their high efficacy in treating AUD.

How does use of SUD services vary by demographics and geography?

Among those with a diagnosed SUD, Black, Hispanic and Asian Medicaid enrollees generally receive SUD treatment at lower rates than White enrollees. White enrollees tend to have the highest treatment rates across categories of treatment. Black enrollees with OUD are far less likely to receive recommended medication treatment (4 in 10 compared to nearly 7 in 10 of their White counterparts). Asian enrollees have lower rates of counseling/therapy than White enrollees. While AIAN enrollees have higher medication treatment rates for OUD (relative to many other groups), their rates for other categories, such as counseling/therapy and supportive care, tend to be more variable. Various factors, including low provider cultural competency and fewer treatment options in diverse communities, as well as perceived need for treatment and personal beliefs related to seeking help, may all play a role in the variation of treatment rates across racial and ethnic groups. In addition, limitations in claims data, such as differences in the data quality of race and ethnicity variables, differences in how often SUDs are diagnosed and recorded and potential exclusion of treatment services provided by Indian Health Services can affect observed treatment rates across racial and ethnic groups (see Methods).

Substance Use Disorder Treatment Varies Considerably by Race, Ethnicity, and Age

Youth and young adults have lower overall SUD treatment rates than older age groups—with treatment rates particularly low for OUD medication treatment among youth. Overall, about 65% of youth and young adult Medicaid enrollees use some type of treatment or service for SUD, compared to 78% for the 27 to 44 age group (Figure 3). Diagnosed SUD is far lower among youth (1.3%) and young adults (5.4%) compared to those aged 27 to 44 (11.2%) (Figure 1). The most notable age-related variation is for medication treatment, with 69% of enrollees aged 27 to 44 receiving medication for OUD, compared to 12% of youth (Figure 3). Medication treatment is currently recommended for some adolescents with OUD. Medication treatment rates for adolescents with AUD are also very low, but medication treatment is not part of current recommendations due to insufficient evidence (Box 1). Males and females use SUD care at similar rates across all types of treatment.

Average utilization of SUD treatment services varies substantially across states. Supportive services, medications for OUD, and inpatient/residential services show particularly wide ranges in treatment rates. Rates for any substance use treatment among diagnosed enrollees range from 53% for the lowest state up to 89% for the highest state. The range across states is particularly pronounced for supportive services and medications for OUD (from 0.1% to 53% for supportive services and 34% to 87% for medication for OUD). Variation is also quite wide for inpatient and counseling services (Figure 4).

There is a Wide Range of Substance Use Disorder Treatment and Service Rates Across States

Although 74% of enrollees are getting some type of treatment or service, 26% of those diagnosed are not getting any services and there is wide variation across states. In the lowest treatment states, 33% to 47% of diagnosed enrollees do not receive any SUD treatment or support services (Figure 5).

Considerable State-by-State Variation in Any SUD Medication or Service, Counseling/Therapy, and Medication Treatment for Opioid Use Disorder

Several states have consistently higher SUD treatment rates across multiple categories. Connecticut, Delaware and Vermont stand out for higher treatment rates across various treatment services. Conversely, there are states with consistently lower treatment rates across categories, including Arkansas, Georgia, Mississippi and Texas (Figure 5). Variation in treatment rates reflects a combination of factors, including differences in states’ coverage policies, state or community efforts to expand access to treatment, treatment infrastructure and workforce, provider participation with Medicaid, and differences in states’ data and the extent to which SUD diagnoses and treatments are captured in the claims data (see Methods).

How does spending for people with SUD compare to overall spending?

Average Medicaid spending is twice as high for enrollees with a SUD diagnosis compared with other enrollees: Over $1,200 per month and less than $550 per month respectively. Notably, spending is highest for those diagnosed with AUD, at approximately $1,400 per month per enrollee. This pattern of higher spending for individuals with a SUD diagnosis is consistent across all age groups (Figure 6).

Average Monthly Spending for Medicaid Enrollees with a Substance Use Disorder (SUD) is Twice That of Medicaid Enrollees Without a SUD

Why is there variation in SUD treatment rates?

This analysis may overestimate SUD treatment rates and may underestimate certain types of treatment. As a result of lower diagnosis rates in claims data, estimates of treatment rates using claims data might appear higher than they really are, as they don’t account for the total number of enrollees with SUD. Several factors may contribute to underdiagnosis, including limited provider screening/referral practices, insufficient provider training for SUD, reduced healthcare use for some populations, and stigma. Expanding screening beyond traditional settings or increasing care integration could improve identification of those in need of SUD services. Although the data may overstate treatment rates as a whole, some specific treatments may be missing in cases where states allow bundled payments that roll several types of SUD treatment and supportive services into a single code. This may result in lower recorded utilization for some services, particularly supportive services and may also impact counseling/therapy rates.

Among enrollees diagnosed with an SUD, there is notable variation in treatment rates for opioid use disorder compared to alcohol use disorder. Overall OUD treatment rates generally exceed those for AUD, likely reflecting a greater policy focus on addressing the opioid crisis. Differences are most acute for medication, where treatment rates for OUD medication exceed AUD medication rates by more than 6-fold. A few factors may help explain why medications for AUD may be less utilized, relative to OUD, including lower awareness and understanding of medication treatment options for AUD among clinicians and patients, uncertainties about medication effectiveness, and challenges finding psychosocial support. While excessive alcohol use can lead to a number of health issues, it typically lacks the acute mortality risks associated with opioid/fentanyl use, which may reduce the urgency to initiate AUD medication treatment. Treatment patterns may differ for other specific types of SUD.

Availability of substance use treatment infrastructure and workforce may play a role in variation in treatment rates for certain populations. For example, youth and young adults receive SUD treatment at lower rates, potentially due to a shortage of specialized facilities for this population. Some states are addressing treatment needs by adding coverage for services in non-traditional settings, such as schools, though it isn’t clear whether these services will appear in Medicaid claims data. Lower treatment rates for some racial and ethnic groups may contribute to higher overdose death rates. Factors such as low provider cultural competency in care, lack of diversity in the behavioral health workforce, personal beliefs and societal stigmas, perceived need for treatment and limited treatment infrastructure or fewer treatment options in diverse communities may all play a role.

Substantial state-level variation in treatment rates exist and may reflect differences in covered services, workforce, infrastructure, state characteristics and the nature of their Medicaid payment systems and data. States expanded coverage for SUD services in recent years. Access to services not only depends on Medicaid coverage of services and the availability of facilities and beds, but also on the presence of a behavioral health workforce to keep facilities operational and to provide treatment services. Other state Medicaid efforts that have focused on addressing the opioid epidemic and other SUDs include reducing prior authorization barriers for buprenorphine, expanding telehealth access, adding OTC Narcan to formularies and exploring pre-release Medicaid coverage for incarcerated populations. There have been federal efforts to expand access to SUD treatment and the President’s budget includes a number of provisions to further strengthen behavioral health, some of which include expanding funding for the State Opioid Response grant program, expanding behavioral health services in schools and strengthening the behavioral health workforce.

Medicaid unwinding may lead to loss or interruptions in coverage for people who depend on Medicaid for SUD treatment. Coverage interruptions could disrupt enrollee access to necessary treatment and increase the risk of overdose or complications. The recent resumption of Medicaid renewals following a three-year pandemic halt, known as the ‘Medicaid unwinding’,  has led to millions of individuals losing Medicaid coverage. Many people who lose Medicaid have alternative insurance options. However, for those who rely on Medicaid to cover SUD treatment, the loss of Medicaid coverage could disrupt their access to ongoing SUD treatment. Such a loss may disrupt treatment and increase overdose or complication risks.

This work was supported in part by Well Being Trust. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.

 

Methods

Medicaid Claims Data: This analysis used the 2020 T-MSIS Research Identifiable Files including  the inpatient (IP), long-term care (LT), other services (OT), and pharmacy (RX) claims files merged with the demographic-eligibility (DE) files from the Chronic Condition Warehouse (CCW).

Identifying SUD Diagnoses: This analysis identified SUD diagnoses using the Behavioral Health Service Algorithm (BHSA) reference codes provided by The Urban Institute. The BHSA identifies SUD with ICD-9 and ICD-10 diagnosis codes, procedure codes, service codes, and National Drug Codes (NDCs). “Any SUD” is a comprehensive category that includes SUDs that involve alcohol, opioids, marijuana, inhalants, sedatives, hallucinogens, psychostimulants, and/or substances labeled as “other” or “unspecified” in claims data. This analysis also separately examined alcohol and opioid use disorders.

See: Victoria Lynch, Lisa Clemans-Cope, Paul Johnson, Marni Epstein, Doug Wissoker, and Emma Winiski. Behavioral Health Services Algorithm. Version 3. Washington, DC: Urban Institute, 2022.

Identifying SUD Utilization and Medicaid Treatment Services Categories of Care: The Urban Institute’s BHSA also identified use of the following SUD treatment service categories:

  • Medication Treatment (OUD/AUD) which includes medications that the FDA has approved for OUD/AUD treatment, other replacement medications, and some psychiatric medications used to treat SUD;.
  • Inpatient or Residential Care;
  • Intensive Outpatient Program (IOP) or Partial Hospitalization Program (PHP);
  • Therapy/Counseling;
  • Supportive Services (includes case management/care coordination, peer supports, vocational training, and other supportive services); and
  • Other Treatment (includes SBRIT screening, assessment, management and evaluation codes, crisis intervention, and services not categorized elsewhere)People who receive one or more type of treatment are considered to have received “any treatment.”

Spending: Spending data includes fee-for-service spending as well as per member per month payments to Medicaid managed care.

Enrollee Inclusion Criteria: This analysis includes enrollees ages 12 to 64 who had full Medicaid or CHIP coverage for at least one month. Treatment rates were similar if the sample was limited to enrollees with at least six months of full coverage.

State Inclusion Criteria: To assess the usability of states’ data, the analysis examined quality assessments from the DQ Atlas for claims volume and managed care encounters and compared the percentage of people with SUD to estimates from the 2021 National Survey on Drug Use and Health (NSDUH) state estimates (due to the unavailability of 2020 NSDUH data).The analysis excluded any states that had both a “High Concern/ Unusable” DQ Atlas assessment and a difference between the NSDUH and claims-based estimates  greater than 10.9 percentage points (which corresponded to the 75th percentile of the distribution of differences). Washington D.C. was excluded based on these criteria, leaving 50 states in the analysis.

For reporting by race/ethnicity, the analysis excluded states with “High Concern/Unusable” DQ Atlas assessments. Among the states in the main analysis, 19 were excluded  (AL, AZ, AR, CO, CT, HI, IA, KS, LA, MD, MA, MO, NY, OR, RI, SC, TN, UT, and WY). This left 31 states for reporting by race/ethnicity (Figure 3).

Limitations of Claims Data:

  • Claims data not capture everyone with SUD because screening/referral practices vary and diagnoses may not be recorded if treatment isn’t received. As a result, the treatment rates calculated from claims data may represent an upper bound of treatment rates since they don’t reflect the full pool of people will SUD.
  • Some states allow bundled payments that rolls several types of SUD treatment and supportive services into a single code, which may result in lower utilization rates for some services and in some states. Services not reimbursed by Medicaid will not appear in claims data.
  • Due to the continuous enrollment provision enacted at the start of the pandemic, Medicaid enrollment increased. Higher enrollment may have implications for service utilization rates in 2020. However, sensitivity tests show similar service utilization in 2019 and 2020 among those diagnosed an SUD. 

National Survey on Drug Use and Health. The National Survey of Drug Use and Health (NSDUH) asks nationally representation sample of respondents 12 and older about substance use and symptoms of substance use disorders. Those who exceed certain thresholds are classified as having a SUD. This analysis uses the 2020 NSDUH public use file and includes Medicaid enrollees between the ages of 12 and 64 who met DSM-V criteria for a SUD involving alcohol or illicit drugs. Illicit drugs include marijuana, cocaine, heroin, hallucinogens, inhalants, methamphetamine and the misuse of prescription psychotherapeutic drugs (i.e., pain relievers, tranquilizers, stimulants, and sedatives). Urban Institute’s BHSA includes the same substances as well as codes for “other” or “unspecified” substances.  NSDUH captures people who may not have a clinically identified or diagnosed case, so rates of SUD are higher than claims data across demographic groups; however, NSDUH may still underestimate SUD prevalence. NSDUH only collects data from people with an address–excluding those who are unhoused, institutionalized, or incarcerated–which is relevant because these populations may have higher rates of substance use disorders.

Appendix

Rates of Diagnosed Substance Use Disorder Among Medicaid Enrollees

What are the Recent Trends in Health Sector Employment

Authors: Emma Wager, Imani Telesford, Paul Hughes-Cromwick, Krutika Amin, and Cynthia Cox
Published: Mar 27, 2024

This updated chart collection takes a deep dive into employment data to analyze how jobs and wages in the health sector have changed since the COVID-19 pandemic. Unlike past recessions, health sector employment saw a big drop in early 2020 but has rebounded since. As of February 2024, the health sector added 66,700 jobs over the previous month. Jobs in the health sector are 5.7% higher than in February 2020 (the previous peak), compared to 3.4% in all other sectors.

Still, not all health sector employment trends have recovered. While hospitals and physicians’ offices have returned to pre-pandemic employment levels, industries such as elderly care and skilled nursing care facilities continue to see relatively low employment. Employment in elderly care facilities reached a low of 869,500 in January of 2022 and has been growing slightly since. These facilities had 974,600 employees nationwide in February 2020, and 965,100 in February of 2024—a 1% decrease. Skilled nursing care facilities have seen an 8.3% drop in employment since February of 2020.

The chart collection is available on the Peterson-KFF Health System Tracker, an online information hub dedicated to monitoring and assessing the performance of the U.S. health system

PEPFAR’s Short-Term Reauthorization Sets an Uncertain Course for Its Long-Term Future

Published: Mar 27, 2024

After months of partisan negotiations and wrangling over the federal budget, Congress finally agreed to spending levels for the remainder of fiscal year 2024, passing an omnibus funding bill on March 23, 2024, that was then signed by President Biden. Tucked into this agreement was a short-term reauthorization of the President’s Emergency Plan for AIDS Relief (PEPFAR, the U.S. government’s global HIV response), its fourth reauthorization. Widely regarded as one of the most successful global health programs in history and credited with saving millions of lives, PEPFAR had been caught up in the broader U.S. political debate over abortion, which had effectively stalled its reauthorization for the first time in what has otherwise been a long, bipartisan history of support. With the new omnibus bill, PEPFAR has been reauthorized until March 25, 2025, without the inclusion of any controversial provisions or changes related to abortion, sought by some. Still, while this latest step provides the program with some short-term certainty, including signaling bipartisan support (albeit limited), it marks a significant departure from PEPFAR’s past. The outcome of the presidential election and Congressional races determining control of the House and Senate could have significant implications for PEPFAR and the millions of people it serves.

Why PEPFAR Reauthorization Was Stalled

As we explored in an earlier analysis, the latest reauthorization of PEPFAR was drawn into the broader U.S. debate about abortion, even though U.S. law prohibits the use of U.S. foreign assistance, including PEPFAR funding, for abortion. The Biden administration and a wide range of stakeholders had been seeking a five-year, “clean” reauthorization of PEPFAR (an extension of the dates of expiring provisions without any changes to program language or requirements), but abortion was first publicly raised in PEPFAR reauthorization discussions in early May. A coalition of organizations opposed to abortion rights, a conservative think tank’s report, and a member of Congress raised concerns that PEPFAR may be supporting abortion, and they criticized the Biden administration’s support for global sexual and reproductive health and rights, including in PEPFAR’s latest strategy document. There was also a call for Congress to reinstate and apply the “Mexico City policy” to PEPFAR (see box).

The Mexico City policy – first instituted in 1984 but not currently in effect – is a policy that required foreign non-governmental organizations (NGOs) to certify that they would not perform or promote abortion as a method of family planning using funds from any source as a condition for receiving certain U.S. funding. Typically put in place through executive order, it first applied to PEPFAR in 2017 under an expanded version of the policy instituted by President Trump, which was rescinded by President Biden in 2021 (prior to that time, when it was in place, PEPFAR was not subject to this policy).

In response, PEPFAR stated that it does not provide a platform for abortion, sent official communication to its implementers regarding current law and policy in this area, and revised its strategy to clarify that “sexual and reproductive health services” has a specific meaning in the PEPFAR context and reiterated that “PEPFAR does not fund abortions, consistent with longstanding legal restrictions on the use of foreign assistance funding related to abortion. In addition, no evidence was produced to indicate that PEPFAR supported any prohibited activities. Despite the lack of evidence, however, reauthorization of the program was effectively stalled, and there was uncertainty about whether the program would be reauthorized again.

What the Omnibus Bill Does, and the Difference Between Authorizing and Appropriations Legislation

The omnibus funding bill that passed on March 23, 2024, funds the government for the remainder of the current fiscal year and also included a short-term reauthorization of PEPFAR, marking the fourth time PEPFAR has been reauthorized (although each prior time, it was reauthorized for five-year periods; see Table 1). The language in the bill extended eight time-bound requirements in PEPFAR’s legislation through March 25, 2025 (essentially, halfway through FY 2025). These included seven provisions that had “sunset” or expired at the end of FY 2023 (September 30, 2023) and one provision that would have sunset at the end of FY 2024 (see Table 2). These requirements will “sunset” again if not addressed through a future PEPFAR reauthorization or another legislative vehicle.

More generally, there is an important distinction between “authorizing” and “appropriations” legislation. Authorizing (or reauthorizing) legislation establishes programs and policies, oversight and reporting requirements, and provides guidance to appropriators on funding amounts and conditions. It may include time-bound provisions or may provide no end date for programs to operate, which they can do as long as they are funded. Such legislation can be put forward as a standalone bill or attached to another legislative vehicle, such as appropriations legislation (which is the case with this latest omnibus bill). Appropriations legislation provides budget authority, allowing funding to be provided to an agency or program; absent an authorization (or reauthorization), an appropriations bill can have the effect of allowing the continued operation of an existing program by providing funding. PEPFAR was created in 2003 through authorizing legislation (The Leadership Act), which established the program, its structure, and other program aspects without including any end date or sunsetting of the program (with the exception of some provisions). This means that PEPFAR largely operates under permanent authorities of U.S. law that allow for the program to continue as long as Congress appropriates funding. The omnibus bill also appropriated bilateral funding for PEPFAR at the same level as the prior year.

Table 1

PEPFAR Legislation

Full TitleCommon TitlePublic Law #YearsFunding Authorization Level
United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003“The Leadership Act”P.L. 108-25FY 2004 – FY 2008$15 billion
Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008“The Lantos-Hyde Act”P.L. 110-293FY 2009 – FY 2013$48 billion
PEPFAR Stewardship and Oversight Act of 2013“The PEPFAR Stewardship Act”P.L. 113-56FY 2014 – FY 2018Did not specify authorization for funding
PEPFAR Extension Act of 2018“The PEPFARExtension Act”P.L. 115-305FY 2019 – FY 2023Did not specify authorization for funding
Department of State, Foreign Operations, and Related Programs Appropriations Act, 2024“Extension of Certain Requirements of PEPFAR”P.L. 118-47FY 2024 – March 25 of FY 2025 (March 25, 2025)Did not specify authorization for funding
Note: Current law is reflected in the consolidation of PEPFAR authorizing legislation in U.S. Code: 22 USC Chapter 83: United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria.Source: KFF analysis of PEPFAR legislation.
Table 2
 

Current Status of PEPFAR Reauthorization’s Time-Bound Provisions

 

Topic of ProvisionDescription
1. HIV Bilateral Funding Allocation: Treatment, Care, Nutrition and Food SupportRequires that more than half of funds appropriated or otherwise made available for bilateral HIV be expended for treatment, care, and nutrition and food support for people living with HIV (through March 25, 2025)
2. HIV Bilateral Funding Allocation: Orphans and Vulnerable Children (OVC)Requires that not less than 10% of funds appropriated or otherwise made available for bilateral HIV be expended for programs targeting orphans and other children affected by, of vulnerable to, HIV (through March 25, 2025)
3. Global Fund Contribution: 1/3 CapLimits U.S. contributions to the Global Fund to not exceed 33% of all funds donated to the Global Fund during a specified period (“1/3 cap”) (through March 25, 2025, calculated from FY 2004)
4. Global Fund Contribution: Use of Funds Withheld Due to 1/3 CapAuthorizes that any of the U.S. contribution to the Global Fund withheld due to the 1/3 cap may be used for bilateral HIV, TB, and malaria programs (through March 25, 2025)
5. Global Fund Contribution: Withholding Obligation of 20% Pending CertificationRequires withholding 20% of annual U.S. contribution to the Global Fund pending certification of certain accountability and transparency benchmarks by the Secretary of State* (through March 25, 2025)
6. Global Fund Contribution: Withholding Portion if Funds Expended to Certain GovernmentsRequires withholding a portion of the U.S. contribution to the Global Fund, the next fiscal year, equal to the amount expended by the Global Fund to country governments determined by the Secretary of State to have “repeatedly provided support for acts of international terrorism” (through March 25, 2025)
7. Annual Treatment Providers StudyDirects the Global AIDS Coordinator to annually complete a study of treatment providers for HIV programs, including spending by the Global Fund and partner countries (through March 25, 2025)
8. Oversight Plans of Inspectors GeneralDirects various agencies’ inspectors general to jointly develop coordinated annual plans for overseeing HIV, malaria, and TB programs (through March 25, 2025)
Note: As of March 23, 2024. * In certain years, Congress directed the withholding to be 10%, rather than 20%.Source: KFF analysis of Further Consolidated Appropriations Act, 2024 (P.L. 118-47) and KFF, PEPFAR Reauthorization: Side-by-Side of Legislation Over Time.

Looking Ahead

After months of uncertainty surrounding reauthorization, which had created confusion and other challenges for the program, this latest step provides the program with some certainty for the time being. The short-term reauthorization signals a demonstration of bipartisan support, including by Congressional leadership – albeit limited – allowing it to move forward without any changes or controversial provisions around abortion (despite those sought by some). It also extends the program’s authorities past the next presidential election, thereby taking PEPFAR somewhat out of the direct line of sight of presidential politics for now. Finally, the bill also included funding for PEPFAR through the end of FY 2024 (which ends September 30, 2024).

At the same time, this latest development marks a departure from PEPFAR’s long-term history of strong support across party lines through multiple Congresses and administrations. It is possible that there will be more polarized debates over PEPFAR and its funding in the future, particularly as March 2025 and the end of the short-term reauthorization draws closer. Moreover, despite the latest reauthorization extending beyond the election, the outcome itself could have significant consequences for PEPFAR, beyond the debate about reauthorization. If President Trump is elected once again, he will almost certainly reinstate the Mexico City policy to apply to PEPFAR (and global health more generally), and it’s possible its reach could be expanded even further, including to encompass all U.S. foreign aid rather than just global health, as recommended in the Heritage Foundation’s Project 2025 report, intended as a blueprint for a Trump administration. While President Biden’s reelection would mean the Mexico City policy would remain rescinded, Republican control of one or both houses in Congress could result in continued controversy over PEPFAR and abortion. Regardless of electoral outcomes, the ground upon which PEPFAR sits has already shifted, potentially changing the political and programmatic calculus for PEPFAR in the years ahead.

U.S. Federal Funding for HIV/AIDS: Trends Over Time

Published: Mar 26, 2024

Introduction

Federal funding for HIV has increased significantly over the course of the epidemic, rising from just a few hundred thousand dollars in FY 1982 to about $43.0 billion in FY 2022 for combined domestic and global efforts. However, it represents just a small fraction (<1%) of the overall federal budget of the United States. The majority of HIV funding (57%) in FY 2022, and the driver of growth in the HIV budget over time, was spending on mandatory domestic care and treatment programs through Medicaid and Medicare, as more people are living with HIV in the United States than ever before, new treatments have become available, and the cost of medical care has increased. In addition, greater investments to combat HIV in low and middle-income countries have also contributed to growth, though these have slowed since 2010. More generally, discretionary funding for HIV from Congress has brought only minor increases, primarily due to the Ending the HIV Epidemic effort, and most accounts have not kept pace with inflation over the last decade. In addition to federal funding, states also contribute to HIV care (primarily via their shared contributions to the Medicaid program), as do private insurance plans.

This fact sheet provides an overview of the federal HIV budget, including trends in federal funding between FY 2018 and FY 2022. Appendix A provides a full history of topline federal HIV funding from FY 1981 to FY 2022.Budget Categories

The federal HIV budget can be organized into five broad categories: care & treatment; cash & housing assistance; prevention; research; and global/international. More than two-thirds (67%) of the FY 2022 budget was for domestic care and treatment programs in the U.S.; 8% was for domestic cash/housing assistance; 3% was for domestic HIV prevention; 6% was for domestic HIV research; and 16% was for the global HIV efforts, including funding for international research.

U.S. Federal Funding for HIV, by Budget Categoy, FY2022E

Mandatory/Discretionary

Federal funding is either mandatory or discretionary. Mandatory spending, primarily for entitlement programs (such as Medicaid and Medicare), is determined by eligibility rules, enrollment, and the cost of services for those who are enrolled, and is not dependent on funding from Congress (e.g., if more people are enrolled and/or the cost of services goes up, mandatory spending will also increase). In FY 2022, mandatory spending for HIV accounted for $27.2 billion, or 63%, of the total HIV budget and includes estimated spending levels for: Medicaid, Medicare, Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), programs which provide health coverage and cash assistance. Mandatory spending has accounted for an increasing share of federal funding for HIV, rising from 52% of total HIV funding in FY 2012 to 63% in FY 2022, largely due to growth in Medicare and Medicaid spending.

Discretionary funding levels are determined by Congress each year through the appropriations process and may, or may not, match the full need for or cost of services. The remaining $15.7 billion (37%) of the federal HIV budget in FY 2022 was discretionary. It was slightly higher than the FY18 level ($14.4 billion). Of the FY 2022 amount, $8.7 billion (20% of the overall HIV budget and 55% of discretionary funding) was for domestic programs – prevention, research, housing, and non-mandatory care programs (e.g., the Ryan White HIV/AIDS Program). The remainder, $7.0 billion (16% of the overall budget and 45% of the discretionary component), was for global HIV/AIDS efforts.

The Domestic HIV Budget

The domestic HIV budget includes funding for care, cash/housing assistance, prevention, and research as follows:

Care

The largest component of the federal HIV budget is health care services and treatment for people living with HIV in the U.S., which totaled $28.7 billion in FY 2022 (67% of the total HIV budget and 80% of the domestic share). This represents a 31% increase over the FY 2018 level, primarily due to increased mandatory spending for Medicaid and Medicare. (Medicare and Medicaid spending includes all care for people with HIV, not just HIV related services.) Medicaid is the largest federal funder of HIV care and treatment, followed by Medicare. States also pay a state share of Medicaid funding, including for HIV care, but those amounts are not included in this analysis. The Ryan White HIV/AIDS Program, the largest HIV-specific discretionary grant program in the U.S. and third largest source of federal funding for HIV care (behind Medicaid and Medicare), was funded at $2.5 billion, representing an 8% increase over FY 2018 level. This increase was due to the launch of the Ending the HIV Epidemic initiative, which included new funding for Ryan White and other domestic HIV programs. Ryan White’s AIDS Drug Assistance Program (ADAP), which provides HIV-related medications and insurance coverage to people with HIV, was flat funded in FY 2022 at $900.3 million.

Cash/Housing Assistance

$3.3 billion of the FY 2022 budget for HIV was for cash and housing assistance in the U.S. (8% of the overall budget and 9% of the domestic budget), a 12% increase over the FY 2018 level of $3 billion. This includes mandatory spending estimates for SSI and SSDI, which provide cash assistance to disabled and older individuals with HIV. Housing assistance, through the Housing Opportunities for Persons with AIDS Program (HOPWA), is discretionary and received $450 million in FY 2022, a $75 million (20%) increase over the FY 2018 level.

Federal Funding for HIV/AIDS, by Category, FY 2018 – FY 2022 (US$ Billions)

Prevention

The smallest category of the federal HIV budget is domestic HIV prevention, which totaled $1.1 billion in FY 2022 (about 3% of the overall HIV budget). This includes funding for domestic HIV prevention across multiple agencies, representing a 21% ($184 million) increase over the FY 2018 level. Most prevention funding is provided to the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP), which received $987 million in FY 2022, an increase of $201 million over the FY 2018 level. Funding increases for domestic HIV prevention were largely attributed to the EHE Initiative (which included $195 million for CDC in FY 2022).

Research

$2.7 billion (6% of the overall FY 2022 amount and 7% of the domestic budget) in the FY 2022 HIV budget is for domestic HIV research across multiple agencies, slightly higher than the FY 2018 level ($2.6 billion). The National Institutes of Health (NIH), which carries out almost all HIV research, receives $2.6 billion in FY 2022 for domestic HIV research activities (additional amounts used for international HIV research are attributed to the global category, discussed below), slightly higher than in FY 2018 ($2.4 billion).1 

Minority HIV/AIDS Initiative

The Minority HIV/AIDS Initiative (MAI), which addresses the disproportionate impact of HIV/AIDS on racial and ethnic minorities in the U.S, was funded at about $57 million through the Office of the Secretary MAI Fund in FY 2022. Additional MAI funding is designated at other agencies within HHS (e.g. within SAMHSA, HRSA, CDC) but levels are not fully available at this time.

The Ending the HIV Epidemic Initiative (EHE)

The “Ending the HIV Epidemic” (EHE) is a federal effort to reduce new HIV infections in the U.S. by 75% in five years and by 90% in ten years. The initiative provides new funds to the regions hardest hit by the HIV epidemic, including 48 counties with a high number of HIV diagnoses, San Juan, Puerto Rico, Washington D.C, and seven states with a substantial rural burden. Funding includes reprogrammed funding FY 2019 and new Congressional appropriations since FY 2020. Funding for the effort has increased each year, representing small but significant increases for the CDC, NIH, and HRSA (Ryan White and Health Centers) and the Indian Health Service (IHS), programs that had effectively been flat funded for many years. In FY 2022, funding for EHE totaled $437.3 million, amounts incorporated in the totals described above. (Overview of the EHE and appropriations history available here.)

The Global HIV Budget

The U.S. government first provided funding to address the global HIV epidemic in 1986. Total funding has increased significantly over time, particularly since the launch of the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003. However, since 2010, funding for global HIV efforts through regular appropriations has remained relatively flat.2  Most U.S. funding for global HIV is considered to be part of PEPFAR, including both bilateral HIV efforts (country-to-country funding) as well as contributions to multilateral organizations, including the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) and the Joint United Nations Programme on HIV/AIDS (UNAIDS).3 

The FY 2022 budget for HIV included $7 billion for the global epidemic – $5.4 billion for bilateral programs, $1.6 billion for the U.S. contribution to the Global Fund, and $50 million for UNAIDS. Global HIV funding amounts to 16% of the overall FY 2022 HIV budget and 45% of discretionary funding. As noted above, funding for global HIV efforts has been relatively flat for over a decade.4 

Bilateral Funding

  • Most bilateral HIV funding is channeled to the State Department which received $4.34 billion in FY 2022, a $65 million (2%) increase compared to the FY 2018 level ($4.28 billion), but still $226 million below its peak funding level in FY 2010 ($4.57 billion).
  • HIV funding through USAID ($330 million) and CDC ($128.9 million) was flat in FY 2022 compared to the FY 2018 level. Funding for international HIV research activities at NIH was $628.14 million in FY 2022, $63 million above the FY 2018 level.

Multilateral Funding

  • Almost all multilateral funding for HIV is provided to the Global Fund, an independent, public-private, multilateral institution which finances HIV, TB, and malaria programs in low- and middle-income countries, and to which the U.S. is its largest contributor. In FY 2022, funding was $1.56 billion for the Global Fund.5  The FY 2022 budget for the Global Fund increased by $210 million (16%) compared to FY 2018.
  • In FY 2022, funding for UNAIDS, the U.N. system’s coordinating body that serves to help galvanize worldwide attention to AIDS, was $50 million, $5 million (11%) above the FY 2018 level.
Federal Funding for HIV/AIDS, FY 2018 - FY 2022 (US$ Millions)

Appendix A

Federal Funding for HIV, FY 1981 – FY 2022 (in Millions)
  1. The NIH does not define HIV research as “domestic” given its broad application. However, for purposes of this analysis, all HIV research funding not designated as “global” is categorized as domestic. ↩︎
  2. In FY 2021, Congress provided an additional $3.8 billion in emergency supplemental funding ($250 million for bilateral HIV and $3.5 billion for the Global Fund) to address the global COVID-19 epidemic. These amounts are not included in the figure and table totals. ↩︎
  3. In addition, international HIV research activities are supported by the NIH Office of AIDS Research (OAR) through its annual appropriated budget, but these amounts are not considered part of PEPFAR. ↩︎
  4. In addition to regular appropriations for global HIV efforts, in FY 2021, in response to the COVID-19 pandemic, Congress appropriated an additional $3.8 billion in emergency supplemental funding, including $250 million for bilateral HIV and $3.5 billion for the Global Fund, to address COVID-19. See, KFF analysis of data from the “American Rescue Plan Act of 2021” (P.L. 117-2). ↩︎
  5. Global Fund grants support country projects to fight HIV, tuberculosis, and malaria. Figures used here are not adjusted to represent an estimated “HIV share.” ↩︎

Global Health Funding in the FY 2024 Final Appropriations Bill

Published: Mar 25, 2024

Updated: March 25, 2024

On March 23, 2024, the President signed the second package of final FY 2024 appropriations bills, otherwise known as the “Further Consolidated Appropriations Act, 2024,” which was released by the House and Senate Appropriations Committees on March 20, 2024, passed by the House on March 22, 2024 and passed by the Senate on March 23, 2024. The bill includes funding for U.S. global health programs at the State Department, U.S. Agency for International Development (USAID), Centers for Disease Control and Prevention (CDC), and National Institutes of Health (NIH).[i] Highlights are as follows:

  • Total funding for global health in FY 2024 declined compared to the FY 2023 enacted level: Funding provided to the State Department and USAID through the Global Health Programs (GHP) account, which represents the bulk of global health assistance, totals $10 billion, or $531 million below the FY 2023 enacted level.
  • The declines were largely due to a decreased contribution to the Global Fund and global health security: The bill provides $350 million less to the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) in FY 2024 compared to FY 2023, though this is due to a funding match requirement that limits the amount the U.S. can contribute (a cap of 33% of total contributions to the Global Fund from all other donors). The bill also includes $200 million less for global health security, as well as a decrease for the Health Reserve Fund, which supports cross-cutting health activities such as health service delivery, health workforce, health information systems, access to essential medicines, health systems financing, and governance in challenging environments.
  • Three global health areas increased slightly in FY 2024:
    • Funding for Gavi, the Vaccine Alliance, increased from $290 million in FY 2023 to $300 million in FY 2024 (this funding is part of the overall maternal and child health area).
    • Funding for nutrition efforts and for the vulnerable children program also increased slightly.
  • All other areas remained flat: This includes funding for HIV through the President’s Emergency Plan for AIDS Relief (PEPFAR), TB, malaria (through the President’s Malaria Initiative, PMI), family planning and reproductive health, and neglected tropical diseases.
  • Also of note:
  • The bill includes $10 million for the Global Health Worker Initiative, the first time Congress has provided funding for this initiative.
  • Funding for global health provided to the CDC and Fogarty International Center (FIC) at the NIH remains flat.
  • The bill contains a one-year reauthorization for the President’s Emergency Plan for AIDS Relief (PEPFAR) through March 25, 2025.

See the table below for additional detail on global health funding in the FY 2024 final bill; also included in the table is a comparison with the FY 2025 President’s budget request, which was released earlier this month on March 11, 2024. See other budget summaries and the KFF budget tracker for details on historical annual appropriations, including Request, Senate, and House amounts, for global health programs.

KFF Analysis of Global Health Funding in the FY24 Final Appropriations Bill

Resources:

  • “Further Consolidated Appropriations Act, 2024” – Bill Text
  • FY2024 Department of State, Foreign Operations, and Related Programs (SFOPs) Appropriations – Explanatory Statement
  • FY2024 Department of Labor, Health and Human Services, and Education, and Related Agencies (Labor HHS) Appropriations – Explanatory Statement

[i] Total funding for global health is not currently available as some funding provided through USAID, NIH, and DoD is not yet available.

News Release

Gross Medicare Spending on Ozempic and Other GLP-1s Is Already Skyrocketing – Even Though Medicare Cannot Cover The Drugs for Weight Loss

Published: Mar 23, 2024

A KFF analysis shows that gross total Medicare spending on Ozempic and other similar drugs has increased dramatically in recent years – even though Medicare is explicitly prohibited by law from covering the drugs for obesity.

That’s because Medicare now covers the drugs, known as GLP-1s, for other medically accepted indications, including to treat diabetes. This week the Centers for Medicare & Medicaid Services (CMS) informed Medicare drug plans that they can cover Wegovy, another drug in this class, for its newly approved use of preventing heart attacks and strokes for people who are obese or overweight.

In 2022, Medicare gross total spending reached $5.7 billion on Ozempic (semaglutide), Rybelsus (semaglutide), and Mounjaro (tirzepatide), all of which it covered for diabetes that year, according to just-released Medicare drug spending data. That was up from $57 million in 2018. (Gross spending does not account for any rebates paid by drug manufacturers to pharmacy benefit managers, which would result in lower net Medicare spending.)

Gross spending on Ozempic alone increased from $2.6 billion in 2021 to $4.6 billion in 2022, pushing it to 6th place among the top-selling drugs in Medicare Part D that year, up from 10th place the year before.

The fact that covering GLP-1s under Medicare Part D for authorized uses is already making a mark on total Part D program spending could be a sign of even higher spending to come as Part D plans are now able to cover Wegovy for its heart health benefits, and if new uses for GLP-1s are approved.

These drugs offer substantial potential health benefits, but the combination of intense demand, new uses, and high prices for these treatments is likely to place tremendous pressure on Medicare spending, Part D plan costs, and premiums for Part D coverage.

Medicare Spending on Ozempic and Other GLP-1s Is Skyrocketing

Published: Mar 22, 2024

This post was updated on March 27, 2024 to include a clarification of the drugs included in the analysis and additional information about rebates.

GLP-1 drugs such as Ozempic, Wegovy, and Mounjaro were initially developed to treat type 2 diabetes, but their effectiveness as anti-obesity medications has generated tremendous excitement and high demand among people who have struggled to lose weight by other means. These drugs are also being tested to treat other conditions, and the FDA has just approved a new use for Wegovy to reduce the risk of adverse cardiovascular events. But the annual cost of these drugs in the US – upwards of $11,000 at recent list prices, though net prices may be lower with rebates negotiated by pharmacy benefit managers – has raised concerns about the fiscal impact of broad coverage of GLP-1 drugs on Medicare, other health insurers, and patients.

Medicare is prohibited under current law from covering drugs used for weight loss, but Medicare Part D plans can cover GLP-1s for their other medically-accepted indications, including to treat diabetes, and now to cut cardiovascular risk based on a recent memo from the Centers for Medicare & Medicaid Services (CMS). While the potential cost of authorizing Medicare coverage of anti-obesity drugs has presented a barrier to enacting legislation to lift the prohibition, covering these drugs under Medicare for authorized uses has already catapulted these drugs to rank among the top-selling drugs covered by Part D, Medicare’s outpatient drug benefit program.

KFF’s analysis of newly released Medicare Part D spending data from CMS shows that total gross Medicare spending on the three newest versions of these diabetes medications that have also been recently approved for weight loss – Ozempic, Rybelsus, and Mounjaro – has skyrocketed in recent years, rising from $57 million in 2018 to $5.7 billion in 2022 (Figure 1). (Gross spending does not account for rebates that result in lower net spending.) Ozempic (semaglutide injection) was approved in December 2017; Rybelsus (semaglutide tablets) was approved in September 2019; and Mounjaro (tirzepatide) was approved in May 2022. As weight loss drugs, semaglutide was approved as Wegovy in 2021 and tirzepatide was approved as Zepbound in 2023. (This analysis does not include all GLP-1s covered by Medicare, only those products with more recent FDA approvals that are also approved as weight loss medications.)

Total Medicare Part D Gross Spending (Before Rebates) on Three GLP-1s Used to Treat Diabetes Increased from $57 Million in 2018 to $5.7 Billion in 2022

Spending on Ozempic alone increased substantially between 2021 and 2022. Ozempic rose from a 10th place ranking among the 10 top-selling Part D drugs in 2021, with gross spending of $2.6 billion, to 6th place in 2022, with spending of $4.6 billion (Figure 2). In total, gross spending under Medicare Part D was $240 billion in 2022; Ozempic accounted for 2% of this amount. This is before taking into account rebates, which Medicare’s actuaries estimated to be 31.5% overall in 2022 but could be as high as 69% for Ozempic, according to one estimate.

Total Gross Medicare Part D Spending on Ozempic (Before Rebates) Increased from $2.6 Billion in 2021 to $4.6 Billion in 2022

Given the relatively high level of gross Medicare Part D spending as of 2022 for the two semaglutide products combined, Ozempic and Rybelsus, it’s possible that Medicare could select this product for drug price negotiation as early as 2025, which would be just over seven years past its earliest FDA approval in late 2017. (For small-molecule drugs like semaglutide, at least seven years must have passed from its FDA approval date to be eligible for selection, and for drugs with multiple FDA approvals, CMS will use the earliest approval date to make this determination.) If that happens, a negotiated Medicare price would be available beginning in 2027. This could lower total Medicare spending on semaglutide products, including Ozempic, Rybelsus, and Wegovy.

The fact that covering GLP-1s under Medicare Part D for authorized uses is already making a mark on total Part D program spending could be a sign of even higher spending to come as Part D plans are now able to cover Wegovy for its heart health benefits, as other uses for GLP-1s are approved, and as policymakers consider legislation that would authorize Medicare to cover obesity drugs. Competition among GLP-1 drugs could have a moderating effect on launch prices and lead to higher rebates negotiated between manufacturers and pharmacy benefit managers. These drugs offer substantial potential health benefits, but the combination of intense demand, new uses, and high prices for these treatments is likely to place tremendous pressure on Medicare spending, Part D plan costs, and premiums for Part D coverage.