Trends in AIDS Drug Assistance Program Support for People With HIV, by Age, Sex, Race, and US Region, 2008‒2021

Abstract

Objectives. To evaluate trends in AIDS Drug Assistance Program (ADAP) utilization among demographic subpopulations.

Methods. For 2008 to 2021, we collected US state-level data regarding ADAP client utilization and estimated HIV prevalence data. We used descriptive statistics to describe state ADAP utilization by geography, demographics (age, sex, race), and programmatic characteristics.

Results. ADAP utilization proportion increased from 14.0% of all people with HIV (PWH) in 2008 to 22.3% in 2021. The proportion of female PWH supported by ADAP was lower in both 2008 (12.2%) and 2021 (18.3%) compared with the proportion of male PWH supported (2008: 14.5%; 2021: 22.9%). In 2008, the utilization proportion was lower for Black PWH at 11.7% compared with 16.0% for White PWH. In 2021, the utilization proportion for Black PWH was 25.2% compared with 28.4% for White PWH.

Conclusions. ADAP enrollment and utilization have increased substantially. Despite equity gains, Black PWH and women were served at lower proportions by ADAP.

Public Health Implications. National and state partners of ADAPs should examine ways to ensure that ADAP utilization is equitable in terms of age, sex, race/ethnicity, and other sociodemographic factors. (Am J Public Health. 2025;115(8):1288–1298. https://doi.org/10.2105/AJPH.2025.308101)

The Ryan White HIV/AIDS Program (RWHAP) has been a vital safety net for low-income people with HIV (PWH) for more than 40 years. AIDS Drug Assistance Programs (ADAPs) are a key component of RWHAP. ADAPs receive federal funding to provide HIV and other essential medications to uninsured, low-income PWH and assistance to cover premiums and HIV-related cost-sharing for insured, low-income PWH. In 2022, ADAPs served more than 235 000 clients, representing 20% of the 1.1 million PWH in the United States.¹ Unlike private insurance and Medicaid, ADAP does not provide major medical coverage.

Because ADAPs are run at the state level, each state may approach ADAP programmatic and policy decisions differently, as long as they meet a federal floor of requirements (e.g., minimum formulary standards and eligibility limited to “low-income” individuals).^2–4 This means that the specific drugs on each ADAP’s formulary, the extent to which an ADAP provides insurance premium and cost-sharing assistance, and even the income eligibility threshold vary by state. External factors—like whether a state has expanded its Medicaid program under the Affordable Care Act (ACA) and whether the state allocates state funding to ADAP—may have an impact on the choices ADAPs make to structure services and the income thresholds for eligibility.¹

Since their inception, ADAPs have evolved to meet the changing needs of clients. As more antiretroviral therapies (ARTs) have been approved by the US Food and Drug Administration, ADAPs have expanded their formularies to include new medications, such as single-tablet and long-acting injectable regimens.⁵ In response to comorbidities and the need to address holistic needs, almost all ADAPs have expanded their formularies to include non-ART medications, including hepatitis C virus direct-acting antivirals and medication-assisted therapy for substance use disorders. Many ADAPs have expanded their insurance assistance programs, developing sophisticated premium and cost-sharing support operations to assist the growing number of ADAP clients who need help affording, or gaining access to, insurance that provides prescription drug coverage. In 2021, 44% of all ADAP clients received financial assistance from ADAPs toward insurance coverage.⁶

To date, to our knowledge, there have been no longitudinal studies examining ADAP utilization and demographic changes of clients over time. Such studies are necessary to understand how ADAPs have evolved and responded to the changing needs of clients and to the rapidly evolving health care landscape outside of ADAP. Longitudinal studies may inform funding and programmatic changes needed to strengthen programs, considering emerging challenges. Understanding client utilization and demographic patterns can help identify gaps in communities being served by ADAP. We evaluated trends in ADAP utilization among key demographic subpopulations using national, regional, and state-level longitudinal data.

METHODS

This longitudinal, descriptive study examined state ADAPs of 51 jurisdictions (the 50 US states and the District of Columbia [DC]) with jurisdiction-level aggregate data for each year. Data on ADAP clients were collected from the National Alliance of State and Territorial AIDS Directors National RWHAP Part B and ADAP Monitoring Project Annual Reports for 2008 through 2021.^5,7–18

For the 51 jurisdictions, we collected publicly available data on the number of PWH by different demographic subgroups from the Centers for Disease Control and Prevention’s AtlasPlus.¹⁹ In the 2017 ADAP Monitoring Project report¹⁴ (which reported calendar year 2015) and in subsequent reports, race and ethnicity were reported separately, making comparisons to AtlasPlus data incompatible. Given this, we collected ADAP client data by race subgroup from the Ryan White Compass Dashboard when assessing trends in utilization by race for years 2016 through 2021.²⁰

Variables

We collected 3 categories of ADAP characteristics: state-level policy, utilization, and client demographics. State-level policy included the states’ annual Medicaid expansion status, defined as whether they had implemented the program by January 1.²¹

Utilization data included the number of ADAP clients supported. Thirty-eight state-years were missing annual ADAP utilization data at the demographic level in the ADAP Monitoring Project Annual Reports. For 31 state-years, we collected and imputed utilization data from the ADAP Data Report.²² Seven state-years’ data were not available (Table A, available as a supplement to the online version of this article at https://ajph.org).

Client demographics included age, sex, and race. Age categories were 13 to 24 years, 25 to 44 years, and 45 years or older. Sex categories were male and female because AtlasPlus was limited to biological sex at birth at the state level. The only race categories included were Black or White. Other racial groups were excluded because of AtlasPlus’s data suppression at the state level.

Statistical Analyses

We used descriptive statistics to summarize and describe longitudinal trends in state ADAP utilization by geography, demographics, and programmatic characteristics. We calculated the ADAP utilization proportion as the number of clients supported by ADAP divided by the total number of PWH for each calendar year. We calculated the absolute change in utilization by subtracting the utilization proportion in 2008 from the utilization proportion in 2021. We calculated relative change by dividing the absolute change in proportions by the 2008 proportion multiplied by 100. We analyzed all characteristics at the national and regional levels. We defined regions according to the US Census Bureau as Northeast, Midwest, West, and South.²³ We performed analysis using R (R Foundation for Statistical Computing, Vienna, Austria) and RStudio (RStudio Inc, Boston, MA).

RESULTS

Of 714 possible state-years of data, 707 state-years (99%) had complete data and were analyzed. We removed 7 state-years (1%) with incomplete data.

National Program Utilization

The utilization of ADAP service increased for PWH from 2008 to 2021. Of 764 312 PWH in 2008, 106 747 were served by ADAP (14.0%), and by 2021, 238 585 PWH of the 1 071 005 PWH were served by ADAP (22.3%), resulting in a relative increase of 59.3% (Table 1). In 2015, ADAPs experienced the largest jump in utilization; 15.1% of PWH were served by ADAP in 2014, which increased to 23.7% in 2015 (Table B, available as a supplement to the online version of this article at https://ajph.org). The utilization proportion remained stable at 23.0% to 23.2% between 2016 and 2018, before rising to 23.9% in 2019 and peaking at 24.4% in 2020 with more than 250 000 PWH served by ADAP (Figure A, available as a supplement to the online version of this article at https://ajph.org).

TABLE 1—

Demographic Characteristics of People With HIV (PWH) and PWH Who Were Served by AIDS Drug Assistance Programs (ADAPs) in the United States for 2008, 2014, and 2021

	2008		2014		2021		Absolute Change Served by ADAP, Δ%	Relative Change Served by ADAP, %
	No. of PWH	Served by ADAP, No. (Row %)	No. of PWH	Served by ADAP, No. (Row %)	No. of PWH	Served by ADAP, No. (Row %)
Total	764 312	106 747 (14.0)	920 107	146 623 (15.9)	1 071 005	238 585 (22.3)	8.3	59.3
Age, y
13–24	32 860	2 961 (9.0)	37 638	5 564 (14.8)	28 056	6 706 (23.9)	14.9	165.6
25–44	345 279	53 779 (15.6)	325 847	59 304 (18.2)	366 625	96 431 (26.3)	10.7	68.6
≥ 45	386 173	50 110 (13.0)	556 622	79 884 (14.4)	676 324	133 437 (19.7)	6.7	51.5
Sex
Female	193 615	23 645 (12.2)	222 409	30 617 (13.8)	234 597	45 065 (18.3)	6.1	50.0
Male	570 697	82 857 (14.5)	697 698	113 520 (16.3)	802 941	189 170 (22.9)	8.4	57.9
Race
Black	308 543	36 088 (11.7)	371 957	53 655 (14.4)	432 227	108 817 (25.2)	13.5	127.4
White	242 640	38 873 (16.0)	278 259	48 195 (17.3)	306 428	85 765 (28.0)	12.4	77.5
Region
Northeast	202 313	27 164 (13.4)	222 887	32 928 (14.8)	234 977	40 751 (17.3)	3.9	29.1
Midwest	88 820	12 078 (13.5)	108 882	17 191 (15.8)	128 839	31 266 (24.3)	10.8	80.0
South	326 052	39 926 (12.2)	410 494	65 005 (15.8)	492 922	114 493 (23.2)	11.0	90.2
West	147 127	27 579 (18.7)	177 844	31 499 (17.7)	214 267	52 075 (24.3)	5.6	29.9
Medicaid expansion
Expanded Medicaid	…	…	498 389	76 062 (15.2)	659 820	131 336 (21.0)	5.8	38.2
Did not expand Medicaid	…	…	421 718	70 561 (16.7)	411 185	107 249 (26.1)	9.4	56.3

Note. Because of missing data, the values in each column may not sum to the column total.

Regional Program Utilization

Consistent with national trends, ADAP utilization increased in each region. States in the South account for the highest number of PWH with 326 052 in 2008 (42.7%). For 2008, while the 39 926 ADAP clients in the South constituted 37.4% of the ADAP client population, the utilization proportion relative to their regional PWH population was the lowest of all the regions (12.2%; Figure 1). In the West, ADAP utilization relative to their regional PWH population was the highest of any region in 2008 (18.7%), while the Midwest and Northeast were lower (13.6% and 13.4%, respectively). Similar to the national trends, all regions experienced the largest increase in utilization proportion from 2014 to 2015; however, the highest increase was observed in the Midwest (15.8% to 24.6%) followed by the West (17.7% to 25.9%), South (15.8% to 24.0%), and Northeast (14.8% to 21.0%). By 2021, the number of PWH served by ADAP in the South increased to 114 493 (23.2%), equivalent to a relative change of 90.2%, and accounted for nearly half of the population of ADAP clients (48.0%). Both the Northeast and West regions had lower relative change in ADAP utilization (29.1% and 29.9%, respectively) compared with their cohorts in the South and Midwest (90.2% and 80.0%, respectively). Furthermore, in 2021, the ADAP utilization proportion was lowest in the Northeast (17.3%) compared with the other regions, despite the 234 977 PWH in the Northeast accounting for 21.9% of all PWH.

FIGURE 1—

Proportion of People With HIV (PWH) Served by AIDS Drug Assistance Programs (ADAPs) in (a) the Midwest, (b) the Northeast, (c) the South, and (d) the West: United States, 2008–2021

Client Demographics

From 2008 to 2021, ADAP utilization increased for every demographic subgroup of PWH, but at variable rates. In 2008, 2961 PWH aged 13 to 24 years were served by ADAP, which accounted for the lowest utilization proportion (9.0%) compared with PWH aged 25 to 44 years and 45 years or older (15.6% and 13.0%, respectively; Figure B, available as a supplement to the online version of this article at https://ajph.org). By 2021, 133 437 clients aged 45 years or older were served by ADAP, accounting for more than half (55.9%) of all clients. More than a quarter of PWH aged 25 to 44 years were served by ADAP (26.3%), followed by PWH aged 13 to 24 years and 45 years or older (23.9% and 19.7%, respectively). As a result, PWH aged 13 to 24 years had the highest relative change (165.6%) compared with PWH aged 25 to 44 years and 45 years or older (68.6% and 51.5%, respectively). However, the utilization proportion was continually highest among PWH aged 25 to 44 years, a trend that did not differ by region (Figure C, available as a supplement to the online version of this article at https://ajph.org).

Utilization proportions differed by sex, with 23 645 female PWH utilizing ADAP in 2008 (12.2%) compared with 82 857 male PWH (14.5%), which increased to 45 065 (18.3%) for female PWH and 189 170 (22.9%) for male PWH by 2021 (Figure D, available as a supplement to the online version of this article at https://ajph.org). The relative change was 50.0% for female PWH and 57.9% for male PWH. Both the number of PWH served and utilization proportions were consistently higher for male PWH by region, except in 2013 in Southern ADAPs (Figure 2).

FIGURE 2—

Proportion of People With HIV (PWH) Served by AIDS Drug Assistance Programs (ADAPs), by Sex in (a) the Midwest, (b) the Northeast, (c) the South, and (d) the West: United States, 2008–2021

In 2008, despite Black PWH constituting 40.4% of all PWH and White PWH constituting 31.7% of all PWH, fewer Black PWH were served by ADAP than White PWH (36 088 and 38 873). In 2008, the utilization proportion was higher for White PWH at 16.0% compared with 11.7% for Black PWH. The difference in utilization proportion between Black and White PWH began to narrow in 2014 (14.4% and 17.3%, respectively), and by 2015, the increase in ADAP utilization observed in the overall population was equivalent for Black and White PWH (resulting in proportions of 22.8% and 25.7%, respectively; Figure E, available as a supplement to the online version of this article at https://ajph.org). In 2021, 108 817 Black PWH utilized ADAP (25.2%) compared with 85 765 White PWH who utilized ADAP (28.4%). From 2008 to 2021, the relative change in utilization proportion for Black PWH was 127.4% compared with 77.5% for White PWH. Regionally, utilization proportions were consistently higher for White PWH compared with Black PWH in the Northeast and West, but were closer and, in some years, higher for Black PWH in the South and Midwest (Figure 3).

FIGURE 3—

Proportion of Black and White People With HIV (PWH) Served by AIDS Drug Assistance Programs (ADAPs) in (a) the Midwest, (b) the Northeast, (c) the South, and (d) the West: United States, 2008–2021

Program Utilization by State Medicaid Expansion Status

Utilization varied depending on state Medicaid expansion status. Starting in 2014, 76 062 PWH were served by ADAP in jurisdictions that chose to expand Medicaid (15.2%) while 70 561 were served in jurisdictions without expansion (16.7%; Figure F, available as a supplement to the online version of this article at https://ajph.org). In 2021, the proportion of PWH served by ADAP in states with Medicaid expansion was lower compared with states that did not expand (21.0% and 26.1%). Subsequently, the relative change in clients served by ADAP increased by 38.2% among jurisdictions that expanded Medicaid, while jurisdictions that did not expand Medicaid increased by 56.3%. Overall, more PWH were served by ADAP among jurisdictions that expanded Medicaid compared with jurisdictions that did not (Table 1), while the utilization proportion was higher in jurisdictions that did not expand Medicaid (Figure F). Regionally, the gap in utilization proportion between Medicaid expansion and nonexpansion states was most notable in the Midwest (Figure G, available as a supplement to the online version of this article at https://ajph.org).

DISCUSSION

ADAP has evolved over the years, reflected by the changes in ADAP client composition over the study years. The largest ADAP utilization increase occurred in tandem with the private health insurance expansion through the ACA, suggesting that ADAP utilization was responsive to external policy changes. What is also striking are the geographic differences in both utilization and client demographics.

Program Utilization Over Time

Over the study period, ADAP enrollment and utilization have increased substantially, both in total number of ADAP clients served and the proportion of PWH in the jurisdiction served by ADAP. The ACA’s massive coverage expansion beginning in 2014—which included expansion of Medicaid in many states and expanded access to individual market private health insurance—was likely a major catalyst for ADAP growth. For individual market private insurance, the ACA reforms eliminated longstanding private insurance policies that either excluded PWH from coverage altogether or based premium amounts on health status and priced PWH out of the market.²⁴ Even as more ADAP clients are able to access subsidized private insurance through the ACA marketplaces, many low-income PWH need ADAP assistance to cover their premiums and cost-sharing.¹

Every geographic region saw increases in PWH served by ADAP over the study period. This was true even in the South, where many states have not yet expanded Medicaid, indicating that ADAP enrollment increases caused by ACA coverage expansion were likely driven in large part by the availability of marketplace coverage. In fact, even though all regions experienced increases in ADAP utilization over the study period, Medicaid expansion states experienced slightly less dramatic increases than non‒Medicaid expansion states, which may demonstrate that some ADAPs disenroll people once they have Medicaid coverage and supports the theory that PWH enrolled in Medicaid may have fewer ADAP needs. However, this does not mean that PWH have reduced RWHAP wrap-around support service needs when on Medicaid.²⁵

What is remarkable about the overall increase in ADAP enrollment is that it has not been accompanied by any concurrent federal funding increase for the program. Instead, RWHAP base funding has remained flat for more than a decade.^1,26 This may mean that ADAPs are becoming more reliant on nonfederal funding, including manufacturer rebates and 340B revenue, to ensure programs are able to grow with increasing enrollment and need.²⁷

Program Inequities

Over the study period, ADAPs have closed the gap in Black PWH served by ADAPs compared with White PWH, and in 2021, the increases in ADAP utilization were consistent across Black and White PWH. However, there are still structural barriers that are preventing Black PWH from using ADAP in numbers consistent with the HIV epidemic demographic trends. A recent study that examined ADAP disenrollments in Washington State found that young, Black, and uninsured PWH were most likely to be disenrolled and that a significant proportion of eligible PWH were denied ADAP services because of a program’s eligibility policy (e.g., requiring completion of recertification paperwork every 6 months) rather than documented ineligibility.²⁸ Since then, many states have shifted to longer periods, up to 2 years, between recertifications.¹⁸ The Washington State study noted that the racial disparities were likely driven in part by the interconnectedness of race and other social determinants of health. This disparity underscores the need for targeted and intentional outreach efforts, including increasing funding and partnerships with Black-led community-based organizations with deep reach into communities that are not currently being served by ADAP and examination of application and recertification processes to identify barriers that can be removed.

Similarly, despite some gains over the study period, women are not being served by ADAP in proportion to the number of women with HIV in each jurisdiction. This is concerning because private health insurance and ADAP are associated with increased odds of retention in care among women with HIV.²⁹ Reaching women may require new partnerships with family planning clinics, domestic violence clinics, obstetrics and gynecology specialists, and other nontraditional community partners.³⁰

It may be useful for federal policymakers to examine how ADAPs can support the federal Ending the HIV Epidemic (EHE) initiative and health equity within this initiative.³¹ It is 1 of the 4 goals of the National HIV/AIDS Strategy to reduce HIV-related disparities and health inequities.³² Currently, ADAP does not directly receive any EHE funding. Instead, most of the funding goes to city and county governmental public health programs. The EHE funding allocated for RWHAP recipients goes to RWHAP Part A and RWHAP Part B recipients, and while there is nothing prohibiting recipients from allocating EHE funding to ADAP, these allocations have been largely absent from EHE programming.³³

Challenges of an Aging Clientele

In 2008, 47% of ADAP clients were aged 45 years or older compared with 56% in 2021. In addition, the proportion of PWH aged 45 years or older supported by ADAP has increased from 13% in 2008 to 20% in 2021. The aging of the ADAP population reflects the advances in HIV ART and the evolution of HIV into a manageable, lifelong, chronic condition, and as the overall number of PWH increases, both as PWH age and as new transmissions persist, ADAPs are seeing increased enrollment. Many ADAP clients are nearing eligibility for Medicare, the federal program that provides health coverage for individuals aged 65 years or older. From 2016 to 2022, the percentage of ADAP clients aged 65 years or older has almost doubled.^1,15 Health Resources and Services Administration has been making strides in encouraging the RWHAP and HIV care system to update clinical care models to be responsive to people aging with HIV.³⁴ However, preparing ADAPs to help clients navigate the transition to Medicare coverage and to help cover Medicare premiums and cost-sharing is essential to ensure uninterrupted care and treatment. ADAPs may need to evaluate their formularies to ensure they are comprehensive enough to meet the needs of an aging client population that may have comorbidities that impact their HIV care and treatment.

Whether and how to adapt ADAPs to changes in the ages of clients will vary by jurisdiction. The average age of clients served by ADAP varies by geography. In the South, for instance, 4% of ADAP clients are between the ages of 13 and 24 years, and 47% are between the ages of 25 and 44 years compared with ADAPs in the Northeast, which have 2% clients between the ages of 13 and 24 years and 32% between the ages of 25 and 44 years.⁶ One reason for this difference could be that in states that did not expand Medicaid (predominantly in the South), ADAPs are serving a greater proportion of younger, low-income clients who would have been eligible for Medicaid had the state expanded under the ACA. This variation across geographic regions underscores the impact that a state’s policy and coverage landscape has on ADAP and how important tailored funding, policy, and programmatic responses are to support ADAPs to adapt to evolving needs.

Effects of the COVID-19 Pandemic

During the COVID-19 public health emergency, ADAP and the RWHAP played a vital role in ensuring that individuals could maintain access to HIV care and treatment.³⁵ However, other health policy responses to COVID-19—primarily the federal requirement that state Medicaid programs suspend their normal renewal and termination processes and keep everyone on the program continuously enrolled during the emergency—took pressure off of ADAP and decreased ADAP enrollment.³⁶ In every geographic region, there was a significant decline in ADAP utilization from 2020 to 2021, when the Medicaid continuous coverage requirements were in effect. Because state Medicaid programs restarted their Medicaid eligibility renewal processes in April 2023, it is possible ADAPs will continue to see flux in their enrollment numbers.

Strengths and Limitations

Some strengths of this analysis include the longitudinal data and the combination of ADAP-specific data with HIV surveillance data to give a better picture of ADAP’s role in the US HIV health care delivery system.

This work has limitations, including that we could not quantify the proportion of eligible PWH who are served by ADAP because income and insurance status are not reported for all PWH annually to the state or federal government. For 2022, national estimates were that 84% of PWH had income less than 400% of the federal poverty level, which would make them eligible by income for ADAP in the majority of jurisdictions if they meet other eligibility criteria.^1,37 While it is possible that the groups that are served at lower proportions had smaller proportions of PWH who were eligible, data from the American Community Survey demonstrates that the mean and median incomes of Black people are less than those of White people and that the mean and median incomes of women are less than those of men.³⁸ We acknowledge that income level alone is not enough to determine a PWH’s eligibility for ADAP, given that PWH with low incomes may have access to comprehensive coverage through Medicaid, Medicare, or other insurance, and may have little or no need for ADAP insurance assistance, depending on how comprehensive the coverage is. Changes in ADAP enrollment and utilization vary by state and across time. For instance, whether and when a state expanded Medicaid under the ACA, and national public health and economic crises like the COVID-19 pandemic, can cause churn across programs that can make it difficult to determine an eligible ADAP PWH population.

Another limitation was that we could not conduct the analysis for all race/ethnicity groups because of data limitations. The analysis could not be conducted for Hispanic PWH because the definition of Hispanic was different between the 2 data sources.^18,19 Future work could explore (1) differences for more race/ethnicity groups and urban or rural populations, (2) ADAPs’ shifting use of direct medication provision and insurance assistance programs, (3) cost implications and funding needs, and (4) the causes of disparities.

Conclusions

National and state partners of ADAPs should examine ways to ensure that, at the local and state level, ADAP enrollment, ADAP recertifications, and access to ADAP-subsidized health insurance have uptake among PWH that is equitable in terms of age, sex, race/ethnicity, and other sociodemographic factors. Further investing in ADAP, through EHE funds or other federal and state funds, may help ADAPs prioritize health equity. Equitable utilization of ADAP is essential, given that ADAP-supported health insurance has been associated with increased viral suppression,^39–41 and disenrollment from ADAP has been associated with loss of viral suppression.⁴² Despite flat funding, ADAPs are ensuring lifesaving access to ART for some of the most vulnerable PWH, which is important for efforts to end the HIV epidemic.