The ADAP “Perfect Storm” Returns; Over 1,000 Patients Being Denied Care

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

What’s old is new, again! The “Perfect Storm” that confronted state AIDS Drug Assistance Programs for nearly a decade and resulted in patients living with HIV/AIDS being denied access to care is now the reality…again! 

According to the National Alliance of State and Territorial AIDS Directors (NASTAD), two states—Iowa and Utah—have implemented waiting lists for their ADAPs, becoming the first to do so in thirteen years. 1,106 patients living with HIV/AIDS are impacted in Iowa, and another 10 in Utah (NASTAD, 2026b).

Photo Source: NASTAD

The reimplementation of waiting lists comes after 12 years of flat funding for ADAP at the federal level and 2 decades of declining state-level funding (NASTAD, 2026a). These conditions have been exacerbated with the passage of the One Big Beautiful Bill, which decimated the social safety net (Segal, 2025). 

ADAP waiting lists were commonplace in the 2000s and into the mid-2010s, with waiting list rosters reaching their peak in 2011, with 9,298 Persons Living with HIV/AIDS (PLWHA) impacted across eleven states (The Henry J. Kaiser Family Foundation, 2017). In 2003, eight patients died while on ADAP waiting lists, including 5 in Kentucky and three in West Virginia (Connolly, 2004).

The reality is that ADAP programs quite literally save lives.

Research published in Clinical Infectious Diseases found that, despite ADAPs serving less than 25% PLWHA in the United States, ADAP clients account for almost a third of the entire viral suppression rate, with viral suppression rates ranging from 81.2% to 91.4% for ADAP client, compared with the overall viral suppression rate of 60% to 66.3% (McManus et al., 2026).

While Iowa and Utah are the first to reintroduce waiting lists, they are unlikely to be the last, particularly given the Trump Administration’s proposed budget, which has been characterized as having an open disdain for federal healthcare and social assistance programs.

Photo Source: Rolling Stone

In April 2026, the White House’s Fiscal Year 2027 Budget proposal calls for the wholesale elimination of the Housing Opportunities for Persons With HIV/AIDS (HOPWA) program, referring to the program as “…outdated by focusing on housing low-income, homeless, and at-risk HIV-positive individuals, as the prognosis and medical care for HIV have significantly improved since the 1990s” (Office of Management and Budget, 2026).

In addition to waiting lists, NASTAD’s April 2026 ADAP Watch also reported that 19 programs are facing budget deficits, citing the following reasons:

• Increasing drug costs/expenditures per client
• Increasing health insurance premium costs
• The expiration of enhanced premium tax credits
• Increasing client enrollment
• Decreasing 340B drug pricing program rebate revenues, and
• Changes in federal allocations or supplemental funding (NASTAD, 2026b)

Two states—Indiana and Utah—have also introduced ADAP enrollment caps, with Indiana capping enrollment at 4,500 patients and Utah at 225 full-pay clients in addition to the aforementioned waiting lists. The travesty happening to Floridians living with HIV/AIDS is an entirely different situation, with one HIV advocate calling it “an open season on people living with AIDS,” and another to pen her pre-obituary as a "protest" as that state attempts to kick thousands of patients off its ADAP services.

Photo Source: ADAP Advocacy

Additional cost-containment measures, including the previously reported lowering of income eligibility thresholds across various states (Hopkins, 2026), are likely to be implemented in the coming year, with little end in sight unless federal and state legislators decide to reprioritize PLWHA.

ADAP Advocacy will continue to monitor and report on changes to ADAP waiting lists as new developments occur, as it is taking steps to launch a national advocacy campaign to confront them.

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Connolly, C. (2004, May 20). States Offering Less Assistance For AIDS Drugs Federal Spending Is Up, but So Is Demand, Survey Finds. The Washington Post. https://www.washingtonpost.com/wp-dyn/articles/A41229-2004May19.html 

[2] Henry J. Kaiser Family Foundation, The (2017, August). AIDS Drug Assistance Programs (ADAPs). Menlo Park, CA: The Henry J. Kaiser Family Foundation: Fact Sheet. https://files.kff.org/attachment/Fact-Sheet-AIDS-Drug-Assistance-Programs

[3] Hopkins, M. J. (2026, March 26). Ryan White Programmatic Funding Balances on a Precarious Precipice. Nags Head, NC: ADAP Advocacy: Blog. https://adapadvocacyassociation.blogspot.com/2026/03/ryan-white-programmatic-funding.html

[4] McManus, K. A., Killelea, A., Rogers, E. Q., Liu, F., Horn, T., Steen, A., Keim-Malpass, J., Hamp, A., & Rogawski McQuade, E. T. (2026, March 25). State AIDS Drug Assistance Programs’ Contribution to the US Viral Suppression, 2015–2022. Clinical Infectious Diseases, ciag034. https://doi.org/10.1093/cid/ciag034

[5] National Alliance of State and Territorial AIDS Directors. (2026a). 2026 National Ryan White HIV/AIDS Program Part B ADAP Monitoring Project Annual Report: Stabilizing the Safety Net: Stewardship and Outcomes in a Volatile Landscape. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2026-rwhap-part-b-adap-monitoring-report

[6] National Alliance of State and Territorial AIDS Directors. (2026b, April). ADAP Watch: April 2026. Washington, DC: National Alliance of State and Territorial AIDS Directors: Resources: ADAP Watch. https://nastad.org/sites/default/files/2026-04/adap-watch-april-2026.pdf

[7] Office of Management and Budget. (2026). Budget of the U.S. Government. Washington, DC: Executive Office of the President: Office of Management and Budget. https://www.whitehouse.gov/wp-content/uploads/2026/04/budget_fy2027.pdf

[8] Segal, B. (2025, July 3). How the ‘One Big, Beautiful Bill’ Targets Medicare and Medicaid. GovFact.org. https://govfacts.org/money/social-safety-net/medicare-medicaid/how-the-one-big-beautiful-bill-targets-medicare-and-medicaid/

NASTAD Releases 2026 ADAP Monitoring Report: Warning Signs Ahead

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its annual National Ryan White HIV/AIDS Program (RWHAP) Part B ADAP Monitoring Report. Highlights from the report indicate that, while the program is achieving the goal of helping ADAP recipients suppress their HIV, the failure of governments to adequately fund state programs and those programs’ increasing reliance on drug rebates imperils the lives of those recipients (NASTAD, 2026a).

Photo Source: NASTAD

The 2026 ADAP Monitoring Report includes findings from Fiscal Year 2024 (FY2024) and Calendar Year 2024 (CY2024) and relies on state and territorial ADAPs to respond to NASTAD’s inquiries about their programs to ensure that the information provided therein is as accurate as possible. That said, 2 U.S. states (Mississippi and West Virginia) and 7 territories (American Samoa, the Federated States of Micronesia, Guam, Marshall Islands, the Northern Mariana Islands, the Republic of Palau, and the U.S.).S. Virgin Islands) failed to respond to these inquiries.

What’s Working Well

Viral Suppression

87% of ADAP recipients in FY/CY2024 achieved viral suppression. This is a considerable improvement over the 74% suppression rate in FY/CY2024 and much better than the national suppression rate of 67%.

HIV suppression rates in the United States have consistently lagged behind those of economically comparable nations (Figure 1). Compared to similar nations, the U.S. HIV viral suppression rate tends to fluctuate between 57% and 67%, while other nations range from 72% (Canada) to 92% (United Kingdom). Persons Living with HIV/AIDS (PLWHA) who are enrolled in ADAP have achieved viral suppression rates that allow the U.S. to “compete” with other nations.

The primary difference between the U.S. and other nations is that those nations provide universal healthcare coverage, allowing patients to rest assured that their HIV medications will be covered. Comparatively, PLWHA in the United States must contend with significant barriers to accessing HIV care and treatment due to our nation’s reliance on a for-profit healthcare system that prioritizes profits over health outcomes. The ADAP program has allowed patients similar surety that they will have access to the medications they need to live healthy, productive lives

Figure 1 - HIV Viral Suppression Rate in the U.S. Lowest Among Comparable High-Income Countries

Photo Source: KFF

Whom ADAP Served in FY/CY2024

In CY2024, ADAPs served 257,644 individual clients across 49 reporting jurisdictions, acting as the primary access point for nearly one-quarter (23%) of the 1.13 million people aged 13 years or older living with diagnosed HIV in the United States at the end of 2023.

This represents a 7.5% increase over CY2019 levels, and NASTAD notes that this increase underscores patients’ growing reliance on the program despite the full implementation of the Affordable Care Act (ACA).

In FY/CY2024, 40% of all ADAP program clients earned 100% or less of the Federal Poverty Level (FPL), and 65% earned 200% or less.

Additionally, nearly half of all ADAP clients (43%) are People of Color (POC), with 38% Black, slightly lower than the 40% who were Black in CY2019. 36% of ADAP clients identify as Hispanic/Latine, a significant increase from 28% in CY2019.

Finally, the majority of ADAP clients (55%) were aged 45 or older, with the proportion of clients aged 65 or older increasing from 9% in CY2019 to 14% in CY2024.

NASTAD notes that the continued “greying” of ADAP enrollees will necessitate “…robust coordination between ADAPs and Medicare to ensure seamless coverage for the aging caseload.”

How ADAP Clients Are Served

Because the AIDS Drug Assistance Program is federally funded but state-administered, each state is allowed to determine how it serves ADAP clients. The traditional ADAP program provides full-pay medication coverage for clients, on which 47% rely.

Since the passage of the Affordable Care Act (ACA), however, the Health Resources Services Administration (HRSA) has allowed state ADAPs to use funds to purchase commercial health insurance coverage for ADAP clients and to reimburse those with employer-sponsored insurance coverage. 41% of clients across the United States rely on the ADAP program for said coverage.

Additionally, 12% of clients rely on a combination of full-pay and insurance support to address critical coverage gaps between drug formularies.

Trouble on the Horizon

In addition to the positive impacts ADAPs have had on clients, significant issues loom over state and territorial programs that threaten their solvency and continued effectiveness.

Rising Costs

The most pressing concerns faced by state ADAPs is that healthcare costs have risen exponentially and are likely to continue rising as a result of both Congressional inaction to increase federal funding for RWHAP and the deliberate refusal of Congressional Republicans to extend the enhance premium tax credits implemented by the American Rescue Plan Act of 2021 (ARPA) and extended by the Inflation Reduction Act of 2022 (IRA).

These tax credits were implemented to lower ACA Marketplace premiums for all patients, and Congress’s refusal to extend them resulted in a 21.7% increase in Marketplace premiums for benchmark second-lowest-cost Silver plans and 6%- 7% increases in employer-sponsored insurance premiums (Holahan, O’Brien, & Kennedy, 2025).

These premium increases highlight what many advocates have argued since the passage of the ACA: The ACA was never likely to control insurance costs because no limits were placed on annual premium price increases.

The primary failure of the American healthcare system is its convoluted, fragmented nature, full of special-interest-driven loopholes. The current “market” theory relies not on patients who need care, but rather on what insurers and government payors are willing to pay.

For-profit entities do not, in fact, care whether or not patients can afford the care they need; that’s not their purpose. Their purpose is to generate profits for their companies and their shareholders.

This results in a system where patients have to forego care and potentially die in the richest nation on the planet.

For ADAPs, these increased premiums pose significant threats to annual budgets, which increasingly rely on medication rebates to fill their coffers.

For nearly a decade, federal funding for ADAP has remained largely flat despite rising costs. In fact, federal funding has not accounted for more than 50% of annual ADAP funding since 2008 (Figure 2). Meanwhile, rebates now account for more than 50% of annual ADAP budgets.

Figure 2 - Total ADAP Budget, By Source, FY1996–FY2024

Photo Source: NASTAD

This places ADAPs at significant risk of being unable to continue providing the level of care and services they offer due to a revenue mechanism subject to “…intense market and regulatory volatility.”

What does this phrase mean?

Essentially, rebates rely on two things: high drug list prices and low 340B purchase prices. Under the rebate model, programs purchase medications at full list price and are reimbursed by pharmaceutical manufacturers for the difference between list price and 340B purchase price.

But what happens when price controls, such as those implemented under the Medicare Drug Negotiation Program created by the IRA, are introduced?

The purpose of the Medicare Drug Price Negotiations is to essentially limit what pharmaceutical manufacturers can charge the federal Medicare program for their medications. This means that a drug with an annual Wholesale Acquisition Cost of $36,000 may be forced to sell its medication to Medicare for $16,000 per year, which significantly reduces the total rebate amount that ADAP pharmacies may receive.

This doesn’t just apply to medications that treat HIV, but to every medication eligible for 340B rebates.

The reality is that, if patients get their way, government price controls are all but assured.

73% of patients surveyed in 2023 said that there was not enough government regulation when it comes to limiting the price of prescription drugs, with 67% or more of respondents agreeing with that sentiment across party affiliation (82% of Democrats, 67% of Independents, and 68% of Republicans; Sparks et al., 2024).

This finding wasn’t a one-time fluke; patients have long been in favor of significant increases in government regulations as they relate to controlling prescription drug prices, with 88% of patients being in favor of limiting annual drug price increases to no more than the rate of inflation, 88% of patients being in favor of the government negotiation drug prices for the Medicare program, 78% being in favor of importing drugs from Canada, 72% being in favor of increasing taxes on pharmaceutical companies that refuse to negotiate prices with the federal government, 63% being in favor of increases taxes on companies who drug prices are too high, and 57% being in favor of ending tax breaks given to drug companies for advertising spending.

What this could mean for state ADAPs is that, with increased patient fury at the healthcare industry and systems, in general, elected officials are more likely to begin listening to patients than to industries. Should significant price controls be implemented, the rebate model could collapse, leaving ADAPs facing the loss of 50% or more of their annual operating budgets.

How Are ADAPs Responding

Faced with the various funding hurdles, state and territorial ADAPs are beginning to implement “cost containment” measures (translation: cuts) that will result in significant negative outcomes for the patients who rely upon ADAP for their HIV medications.

These “cost containment” measures include (but are not limited to):

• Decreasing income eligibility requirements so that fewer PLWHA are eligible for benefits
• Delaware eligibility decreased from 500% of the FPL to 350%, effective for all clients as of April 1st, 2026, impacting ~176 patients
• Florida decreased from 400% to 130% of the FPL effective March 1st, 2026, impacting ~16,000 patients
• Kansas decreased from 400% to 250% of the FPL to receive ACA premium assistance, while maintaining the 400% limit for full-pay medication coverage, impacting ~230 patients
• Pennsylvania decreased from 500% to 350% of the FPL effective October 1st, 2026, impacting ~1,592 patients
• Rhode Island decreased from 500% to 400% of the FPL effective March 1st, 2026, impacting ~51 clients
• The following states are considering additional changes to income eligibility:
• Arkansas, Louisiana, New Jersey, Rhode Island, Virginia, & Washington State
• Reducing RWHAP Part B funding for core medical/support services
• Implemented in Arkansas, Connecticut, Delaware, Kansas, Louisiana, Michigan, Pennsylvania, Rhode Island, Virginia, & Wisconsin
• Implementing or reimplementing 6-month recertification requirements
• Implemented in Alaska, Oklahoma, & Rhode Island
• Introducing per-patient expenditure caps
• Implemented in Arizona, Colorado, Delaware, the District of Columbia, & Nevada
• Reducing formulary coverage for both HIV-related and non-HIV-related medications
• Implemented in Arizona, Florida, Louisiana, Michigan, Nevada, & Pennsylvania
• Decreasing, restricting, or eliminating insurance premium assistance
• Implemented in Florida, Michigan, Montana, Oklahoma, & Wisconsin (NASTAD, 2026b)

HIV advocates and activists are also concerned about the potential reintroduction of state ADAP program waitlists, with Arkansas, Louisiana, & New Jersey reporting that they are considering implementing waitlists (NASTAD, 2026b).

The reality of this landscape is that trouble is brewing for RWHAP and the PLWHA who depend upon its various parts and programs to stay alive. ADAP Advocacy will continue to monitor and report on circumstances as they develop.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Holahan, J., O’Brien, C., & Kennedy, N. (2025, December 18). Understanding the Extraordinary Increase in ACA Premiums in 2026. Washington, DC: Urban Institute: Research: Publication. https://www.urban.org/research/publication/understanding-extraordinary-increase-aca-premiums-2026

[2] KFF. (2025, January 24). HIV Viral Suppression Rate in U.S. Lowest Among Comparable High-Income Countries. Washington, DC: KFF: HIV/AIDS. https://www.kff.org/hiv-aids/hiv-viral-suppression-rate-in-u-s-lowest-among-comparable-high-income-countries/

[3] National Alliance of State and Territorial AIDS Directors. (2026a). 2026 National Ryan White HIV/AIDS Program Part B ADAP Monitoring Project Annual Report: Stabilizing the Safety Net: Stewardship and Outcomes in a Volatile Landscape. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2026-rwhap-part-b-adap-monitoring-report

[4] National Alliance of State and Territorial AIDS Directors. (2026b, February 09). NASTAD ADAP Watch - February 2026. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/resources/nastad-adap-watch-february-2026

[5] Sparks, G., Kirzinger, A., Montero, A., Valdes, I., & Hamel, L. (2024, October 04). Public Opinion on Prescription Drugs and Their Prices. Washington, DC: KFF: Health Costs. https://www.kff.org/health-costs/public-opinion-on-prescription-drugs-and-their-prices/

State Payors Make Advancements in Coverage of HIV Long-Acting Injectable Treatments

By: Marcus J. Hopkins, ADAP 340B Consultant

As of June 2025, 47 state AIDS Drug Assistance Programs (ADAPs) and all state Medicaid programs offer coverage for Cabenuva (cabotegravir; rilpivirine), a long-acting injectable (LAI) for the treatment of HIV/AIDS. This represents a significant change from 2023, when ADAP Advocacy found that just 40 state ADAP and 39 state Medicaid programs offered coverage for Cabenuva.

According to the National Alliance of State and Territorial AIDS Directors (NASTAD), only four state ADAP programs—Louisiana, Missouri, South Dakota, and Texas—do not currently offer coverage for Cabenuva. However, last month the Texas Legislature approved $338 billion two-year spending plan with funds to support Long-Acting Injectables (LAIs) for the Texas AIDS Drug Assistance Program (Figure 1).

Figure 1 – Long-Acting Injectable Coverage Map – Cabenuva – ADAP Coverage by State, June 2025

In addition to 47 state ADAPs offering coverage for Cabenuva, all state Medicaid programs currently provide coverage through either their fee-for-service Medicaid program or one of their Managed Care Organizations (MCOs; Figure 2). Medicaid coverage of Cabenuva, along with coverage provided by commercial insurance plans, is more difficult to quantify, as many plans may include coverage as a medical benefit rather than a pharmacy benefit. Finding information about drugs covered as medical benefits often requires searching through dozens, if not hundreds, of plan documents.

This was the case when researching Medicaid Preferred Drug Lists (PDLs). When ADAP Advocacy was unable to find direct confirmation of coverage for Cabenuva, it relied upon Long-Acting Agent Resource Center’s Cabenuva Coverage Map, a project of the American Academy of HIV Medicine (https://hivlaa.org/map/), to provide coverage information. Coverage information for the following 11 states was gleaned using this resource: Colorado, Georgia, Indiana, Iowa, Kansas, Kentucky, Montana, Nebraska, South Carolina, South Dakota, and Wisconsin.

Figure 2 – Long-Acting Injectable Coverage Map – Cabenuva – Medicaid Coverage by State, June 2025

ADAP Advocacy, under the direction of its 13-member ADAP Long-Acting Injectables Patient Advisory Committee, first began tracking ADAP and Medicaid coverage of Cabenuva, along with other LAIs to prevent or treat HIV in 2023 (Hopkins, 2023), when it was discovered that several state Medicaid programs were offering coverage of Cabenuva—first approved for monthly treatment in 2021, with a secondary approval for bi-monthly injections in 2022 (ViiV Healthcare, 2022)—in name only, with many states placing virtually insurmountable prior authorization (PA) requirements between patients and their life-saving medications. The formulary research into drug coverage and PA requirements led ADAP Advocacy to conduct original quantitative and qualitative patient-side research on sentiments and attitudes toward long-acting agents.

Key findings from ADAP Advocacy's research include:

• The majority of respondents to the Treatment Survey (52.3%) indicated that they would prefer receiving LAI medication to treat their HIV over a daily pill-based regimen; In the Prevention Survey, the majority of respondents (71.4%) indicated they would prefer an LAI over a daily pill-based regimen to prevent HIV.
• The vast majority of respondents to the Treatment Survey (87.8%) indicated being aware of Cabenuva as an LAI to treat HIV. Of those respondents who learned about the existence of LAI medications through this survey, half (50%) reported being open to discussing them with a medical provider; Just over half of respondents to the Prevention Survey (58.4%) indicated being aware of Apretude for use as LAI PrEP. More than four out of every ten respondents (42.2%) who learned about the existence of Apretude through this survey reported being open to discussing it with a medical provider;
• A majority of respondents to the Treatment Survey (87.7%) indicated having no issues finding information about LAI medications. Of those respondents who did have trouble finding information (12.3%), most respondents had trouble finding information about insurance coverage (78.6%), prior authorization requirements (78.6%), and the cost they would have to pay to access LAIs (71.4%);
• Insurance coverage barriers impacted respondents’ ability to pursue LAIs, with more than 1 in 4 survey respondents (27%) reporting this barrier in the Treatment and Prevention surveys. In the case of PrEP, a majority of those experiencing this (66%) indicated that the barriers to access were so cumbersome that they decided Apretude was not right for them.

In addition to coverage for Cabenuva, ADAP Advocacy also found that:

• 2 state ADAP programs (MA & MN) and 40 state Medicaid programs offer coverage for Apretude as Pre-Exposure Prophylaxis (PrEP);
• 43 state ADAP and 42 state Medicaid programs provide coverage for Sunlenca as HIV salvage therapy; and,
• 50 state ADAP and 32 state Medicaid programs provide coverage for Trogarzo as HIV salvage therapy.

Coverage for LAI drugs is of ever-increasing importance for People Living with HIV/AIDS (PLWHA) as long-acting agents may help to increase medication adherence and reduce the risk of creating multi-drug-resistant strains of the HIV virus. ADAP Advocacy will continue to monitor coverage of LAIs and provide updates when significant changes are made.

[1] Hopkins, M. J. (2023, July 20). The state of long-acting injectable Medicaid coverage. Nags Head, NC: ADAP Advocacy. https://adapadvocacyassociation.blogspot.com/2023/07/the-state-of-long-acting-injectable.html

[2] ViiV Healthcare. (2022, January). ViiV Healthcare announces US FDA approval of Cabenuva (cabotegravir, rilpivirine) for use every two months, expanding the label of the first and only complete long-acting HIV treatment. https://viivhealthcare.com/hiv-news-and-media/news/press-releases/2022/january/viiv-healthcare-announces-fda-approval-of-cabenuva-for-use-every-two-months/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.    

NASTAD Releases 2025 Monitoring Project Annual Report

By: Ranier Simons, ADAP Blog Guest Contributor

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its 2025 National RWHAP Part B ADAP Monitoring Project Annual Report. This is the 28th year of the report, which documents key trends, challenges, and triumphs of state and territorial AIDS Drug Assistance Programs (ADAPs). The report is based on longitudinal data acquired through survey responses. The data covers fiscal year 2023 (FY2023) and calendar year 2023 (CY2023). Of the 58 surveyed jurisdictions that received ADAP earmark funding, 49 provided data. No fiscal or programmatic data were received from Alabama, Montana, West Virginia, the U.S. Virgin Islands, or the Pacific Island Jurisdictions. Limited programmatic data were received from Alaska and South Dakota.

Photo Source: NASTAD

Key findings from this year’s report include:

• Ryan White Part B program funding remained flat. Congressional appropriations for RWHAP Part B in FY2023 was $1.3 billion, with $899.7 million awarded explicitly to ADAP from HRSA. This was the same level of funding as in FY2022.
• Pharmaceutical rebates accounted for the largest share of the overall FY2023 ADAP budget, at 50%. Federal ADAP earmark funding constituted 31%
• The total number of clients enrolled, the number of new clients enrolled, and total number of clients served increased from FY2022. There were 4.7%, 15%, and 4% increases, respectively. 
• Out of the top ten states with the highest number of ADAP clients served, Florida was first serving 29,883 clients, and California was second serving 28,123 clients.
• Of all ADAP clients surveyed from responding jurisdictions during CY2023, 41% had incomes at or below 100% of the federal poverty level (FPL). The majority of ADAP clients, 66%, have incomes at or below 200% FPL.
• In CY2022, 42%, less than half of clients served were people of color, with the majority identifying as Black/African American. In CY2023, 38% of ADAP clients served were Black/African American, compared to 46% in CY2018. Conversely, the proportion of White ADAP clients increased to 54% in CY2023 from 40% in CY2018. Hispanic/Latinx clients comprised 33% of CY2023 clients served compared to 21% in CY2018.
• Biktarvy constituted the majority of ADAP antiretroviral drug expenditures

Photo Source: NASTAD

Discussion

One of the primary goals of Ending the HIV Epidemic in the U.S. (EHE) is viral suppression (Centers for Disease Control and Prevention [CDC], 2024, Mar 20). Of the 47 jurisdictions that provided data, 85% of ADAP clients served in CY2023 reported viral suppression. Comparatively, out of 47 reporting programs in CY2014, 63% reported viral suppression, and out of 53 reporting programs in CY2018, 80% reported viral suppression. These increasing numbers are evidence that ADAP programs are effective and worthwhile public health expenditures. Moreover, CY2023 ADAP client viral suppression is vastly higher than the overall percentage of all people in the U.S. living with diagnosed HIV reporting viral suppression in 2022, which was only 65%. (Centers for Disease Control and Prevention [CDC], 2024, Dec 12).

Regarding funding, some state ADAPs are concerned about the prospect of major reductions in federal funding to state Medicaid programs as part of FY2025 Congressional budget processes. This would fiscally adversely affect ADAPs since federal funding reductions would likely not be bolstered by any increased state investment into the Medicaid program. Thus, ADAPs would have to spend more to help those who may lose Medicaid coverage or be unable to transition to Medicaid if there is a loss of expansion.

Moreover, ADAPs provide full-pay medication assistance as well as ADAP-funded insurance programs for which clients' premiums, deductibles, and cost-sharing are paid. In CY2022, ADAPs provided insurance support for 128,418 clients, spending $698 million with an average cost per enrollee of $5,272; in CY2023, ADAPs spent $745 million on 101,502 clients with an average cost of $7344. Total and per-client expenditures were markedly higher in CY2023, although fewer people were served. According to the report there were also 44,033 ADAP clients served who were enrolled in Medicare (Table 18). It is possible to qualify for Medicare and ADAP with ADAP paying for patient cost-sharing of Medicare Part D prescription drugs that ADAPs cover. The changing landscape of insurance assistance proves that more funding is needed, not less.

Photo Source: NASTAD

 Geographically, the annual report reveals a shift in viral suppression trends. The states with less than 80% of ADAP clients with <200 copies/ml viral loads are primarily concentrated in the Midwest (Chart 8). Seven EHE jurisdictions are in the U.S.: Cook County, Illinois; Marion County, Indiana; Wayne County, Michigan; the entire state of Missouri; and Cuyahoga, Franklin, and Hamilton Counties in Ohio (AETC. 2023). This would indicate that research needs to be done to uncover what caused the shift from the lower levels of viral suppression among ADAP clients in the South to ADAP clients in the Midwest.

The 2025 National RWHAP Part B ADAP Monitoring Project Annual Report contains a wide range of data in its pages, tables, and charts. The report is encouraging, proving that the RWHAP program effectively achieves beneficial health outcomes for the clients it serves. It is also an alert to challenges and a forecast of how ADAPs may need to adjust and innovate to survive.

[1] AIDS Education and Training Center (2023, August 4). AETCs and the Ending the HIV Epidemic Initiative. Retrieved from https://aidsetc.org/ehe

[2] Centers for Disease Control and Prevention (2024, March 20). Ending the HIV Epidemic in the US Goals. Retrieved from https://www.cdc.gov/ehe/php/about/goals.html

[3] Centers for Disease Control and Prevention (2024, December 12). National HIV Progress Report, 2024. Retrieved from https://stacks.cdc.gov/view/cdc/170363

[4] National Alliance of State and Territorial AIDS Directors (2025). 2025 Annual Report: National RWHAP Part B ADAP Monitoring Project annual report. Retrieved from  https://nastad.org/2024-rwhap-part-b-adap-monitoring-report

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Harvard Pilgrim Health Care Offered Discriminatory Plans to People Living with HIV

By: Ranier Simons, ADAP Blog Guest Contributor

Discrimination is nothing new for people living with HIV/AIDS (PLWHAs), as it impacts multiple facets of their daily lives. Aside from HIV-related discrimination in employment, housing, healthcare, and criminal justice, an often-overlooked area is insurance. Discriminatory plan design refers to the barriers health insurance companies impose on PLWHAs thereby limiting access to care and treatment for years, advocacy groups have battled insurers with public scrutiny and, in some cases, litigation (Andrews, 2016.) Despite some coverage improvements, complaints and lawsuits continue as insurers maintain practices in non-compliance with federal law. 

Photo Source: AIDS Foundation of Chicago

One recent large plan instance of discriminatory coverage involved Harvard Pilgrim Health Care (HPHC). In November of 2024, the HIV+Hepatitis Policy Institute filed discrimination complaints against HPHC because their Core 4-Tier and Core 5-Tier plans in Maine, New Hampshire, and Rhode Island contained inadequate coverage of HIV antiretrovirals in violation of the ACA. In solidarity of the cause, several other groups sent a letter to the insurer. A few of the groups included were the Federal AIDS Policy Partnership (FAPP), HealthHIV, NASTAD, and AIDS Alabama (HIV+HEP, 2024).

The U.S. Department of Health and Human Services (HHS) guidelines recommend four preferred treatment regimens as initial HIV antiretroviral therapy: Biktarvy, Dovato, Symtuza, or a combination of Tivicay with either Truvada or Descovy (“Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV,” n.d.). The plans only covered Dovato or Tivicay + Truvada. Biktarvy is a single-pill regiment prescribed to over 49% of PLWH and should be covered (HIV+HEP, 2024). Dovato was covered but is not appropriate for PLWH with high viral loads or HIV that is resistant to lamivudine or dolutegravir. The plans excluded Symtuza, even though it is the only recommended treatment for PLWH who have taken long-acting injectable PrEP (cabotegravir) and have possible HIV resistance to Integrase strand transfer inhibitors (INSTI) (HIV+HEP, 2024). There are other clinical situations where HHS guidelines recommend Delstrigo, Odefsey, Triumeq, and a combination of Prezcobix and Epzicom as initial regimen alternative therapies. The plans covered only Odefsy and Triumeq (HIV+HEP, 2024).

When patients lose access to covered medications, they not only experience lapses in treatment but sometimes must change to treatments that are not the best for them. Sometimes, even alternative therapies still result in a financial burden or non-adherence due to treatment. If a patient is moved from a single-pill regimen to a multi-pill treatment, they are likely to have issues staying consistent with their treatment plan (HIV+HEP, 2024). Lack of coverage on one plan may also force a patient to choose a different one that may cover their needed medication but has adverse financial effects.

Photo Source: HIV + HEP Policy Institute

As a result of advocacy bringing public awareness directed at state policy leadership and insurance carriers, HPHC reversed its problematic coverage decisions and updated the Maine, New Hampshire, and Rhode Island formularies at the end of December. For 2025, they now cover eight complete initial HIV treatment regimens: Biktarvy, Dovato, Symtuza, Tivicay (in combination with Truvada or Descovy), Delstrigo, Odefsey, Triumeq, and Prezcobix (in combination with abacavir and lamivudine) (HPHC, 2025). While this is progress, the medications are located on the highest drug tiers of the formularies. This may render the formularies clinically effective, but they are still cost-prohibitive. Drugs on the highest formularies have the highest cost-sharing for patients, requiring them to pay significant percentages of the drug's prices as co-insurance. A high financial burden is still a barrier to access and effective care. 

As Tim Horn, Director of Medication Access with NASTAD, points out, “Relegating virtually all branded antiretrovirals to the highest cost-sharing tiers has been associated with co-insurance that typically exceeds 25% of the retail cost of the prescribed antiretroviral drug product(s), which can be considerable costs, certainly for plan beneficiaries but also for safety net programs like state ADAPs.” Director Horn also adds, “ADAP-funded insurance programs providing premium and cost-sharing support for people living with HIV are likely important factors in these carriers' decisions to ultimately engage in discriminatory formulary design practices. Of course, it is vitally important that ADAPs are able to provide premium and cost-sharing support for their clients and, likely, a significant proportion of otherwise uninsured people living with HIV in these states.”

Insurance companies do not want ADAPs to utilize their plans because they are a built-in permanent population of covered lives requiring expensive medication. Director Horn further explains, “Carriers, particularly those operating in states where few other carriers or Marketplace plans, likely consider ADAPs making their plans affordable for people living with HIV as a risk to their bottom lines. The result, as we saw with the initial Harvard Pilgrim Health decision to remove a huge swath of important antiretroviral drugs from its core formularies in three states, can be profoundly cynical and discriminatory practices that can have serious repercussions for both people living with HIV and the vitally important, yet fiscally constrained, HIV programs, such as state ADAPs.”

According to Carl Schmid, Executive Director of the HIV+Hepatitis Policy Institute, more vigorous enforcement would be a solution to discriminatory plan design. For example, in Texas, the Affordable Care Act guidelines are not enforced by the state insurance regulator but are enforced by the federal government. Moreover, the federal government constructs templates delineating ACA appropriate coverage guidelines for insurance plans to follow. Schmid explains that the templates in use are outdated, thus not reflecting current best practices. Hence, the federal government is not effectively engaging in enforcement. 

Unfortunately, advocacy groups and public outcry are how most insurance companies’ discriminatory plan malfeasance comes to light. Currently, many other grievances are being elevated and watched. Two, in particular, involve Medica and Community Health Choice Texas. HIV + HEP Policy Institute filed complaints against Medica in Minnesota and Iowa for inadequate recommended coverage in addition to placing all HIV antiretrovirals on their highest tiers. Their filing in Texas against Community Health Choice was also regarding inadequate HIV drug coverage regarding treatment guidelines (Burke, 2024).

The vigilance of advocacy groups, patients, and other entities is the only robust tool against discriminatory plan design. Until more effective federal and state enforcement occurs, there will not be any consistent ethical and legal behavior in the industry. The law, regulations, guidance, and implementation all must be aligned. As Schmid states, “Insurers will try to get away with as much as they can until they are caught.”

Patients living with HIV experiencing similar health plan discriminatory design are encouraged to alert the HIV + HEP Policy Institute at https://hivhep.org/contact/.

[1] Andrews, M. (2016, October 18). 7 Insurers Alleged To Use Skimpy Drug Coverage To Discourage HIV Patients. Retrieved from https://kffhealthnews.org/news/7-insurers-alleged-to-use-skimpy-drug-coverage-to-discourage-hiv-patients/

[2] Burke, J. (2024, December 17). Press Release. Retrieved fromhttps://hivhep.org/wp-content/uploads/2024/12/hiv-discrimination-complaints-maine-harvard-pilgrim-12.17.24.pdf

[3] Guidelines for the use of antiretroviral agents in adults and adolescents with HIV. (n.d.). In Centers for Disease Control and Prevention, U.S. Food and Drug Administration, Health Resource and Services Administration, & National Institutes of Health, Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. https://clinicalinfo.hiv.gov/sites/default/files/guidelines/documents/adult-adolescent-arv/tables-adult-adolescent-arv.pdf

[4] Harvard Pilgrim Health Care. (2025, January 2). Press Release. Retrieved from https://www.harvardpilgrim.org/public/news-detail?nt=HPH_News_C&nid=1471978029629

[5] HIV + HEP Policy Institute. (2024, November 8). Substandard & Discriminatory HIV Medication Coverage & Plan Design by Harvard Pilgrim Health Care. Retrieved from https://hivhep.org/wp-content/uploads/2024/11/maine-harvard-pilgrim-HIV-complaint-11.8.24.pdf

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Is Congressional Support for HIV Funding Waning?

By: Ranier Simons, ADAP Blog Guest Contributor

Federal funding is the backbone of many government functions and influences many aspects of our daily lives. Federal spending allows the Pentagon to function, supports educational programs such as Head Start, helps maintain our infrastructure, and, most importantly, affects healthcare. One aspect of healthcare with a heavy reliance on federal funding is HIV/AIDS. But has that funding kept pace with the need for people living with HIV/AIDS (PLWHA)?

Photo Source: Medical Marketing & Media

The federal government invests both mandatory and discretionary spending regarding HIV. Mandatory spending is set by laws and statutes.[1] Some of the mandatory spending related to HIV services includes Medicare, Medicaid, and Social Security Disability Insurance.[1] Discretionary spending is determined each year by Congress through the appropriations process. This includes programs such as the Ryan White HIV/AIDS Program (RWHAP) and AIDS Drug Assistance Programs (ADAP). Although needs have increased and priorities have evolved, federal funding regarding HIV has remained essentially flat and, in some cases, faces threats of cuts, which could result in unsatisfactory health outcomes. This is especially true regarding HIV and aging.

Discretionary funding supports HIV treatment and continual testing programs, helps entities to provide and promote the utilization of PrEP, and even enables assistance with social determinants of health concerns such as housing instability. However, RWHAP's core budget has been left primarily flat since 2013, although it has added 50,000 patients.[2] The program serves low-income PLWHA. Over 50% of PLWHA are dependent upon the RWHAP annually for services needed to survive and thrive, such as medication and essential support services.[3] Likewise, Emily M. Schreiber, Senior Director of Policy & Legislative Affairs for NASTAD, points out that ADAP funding last increased in FY2014. From 2014 to 2022, ADAP client enrollment increased by 60 percent.

ADAP has increasingly relied on rebates from drug manufacturers under the 340B Drug Pricing Program, but ongoing abuses by big hospital systems and mega service providers threaten the solvency of that program. Congress is knocking on 340B's proverbial door, saying: "Show Me the Money".

Exacerbating the urgency for increased spending is more extended life expectancy. Advances in medical science, such as antiretroviral therapy, mean that PLWHA are living longer. More than 50% of PLWHA in the United States are over 50, with estimates projecting that by 2030 it will be 70%.[3] Living longer means that PLWHA are dealing with many HIV-associated non-AIDS health conditions partly stemming from HIV-related chronic inflammation in the body and long-term use of strong antiviral medications.[4,5] These include diabetes, cardiovascular disease, renal disease, and cancer. Moreover, PLWHA dealing with comorbidities must navigate multiple medications, increased risk for drug reactions, and coordinate multi-specialty care.[3] 

Photo Source: Kaiser Family Foundation

Many PLWHA 65 years of age and older are covered by Medicare, and about 40% depend upon Medicaid.[3] Ten states have yet to expand Medicaid. Additionally, studies show that Ryan White-funded patients with private insurance have better health outcomes than those on Medicare. Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, states, “With people living longer, we must sustain funding just to support the services for them, but at the same time, our goal is to bring more people into HIV care and treatment. Without that additional funding, our progress in ending HIV will remain basically stalled. While we are fighting proposed cuts, we must also examine ways to use the existing federal resources in different innovative ways to make the progress we need.”

PLWHA are also being affected by discretionary funding challenges with programs that are not expressly HIV related. One such program is the Teaching Health Center Graduate Medical Education program (THC). Most primary care medical residents receive their residency training in hospitals. The Center for Medicare and Medicaid Services pays hospitals billions for primary care and other specialty residency training.[6] Conversely, the THC program trains residents in outpatient clinics instead of hospitals and has $215 million to spend through 2024. THC gives residents extensive community-based outpatient residency training in facilities such as federally qualified health centers and community clinics that are in underserved urban and rural areas.[6]

Data shows that graduates of THC residencies are more likely to remain and practice in local communities. Many PLWHA reside in underserved urban and rural communities. The THC program not only trains residents on how to care for these populations but is also a pipeline of an effective workforce to bolster care deserts. Many PLWHA in underserved areas have difficulty finding robust primary care services and infectious disease care. Effective primary care will lead to improved healthcare outcomes for PLWHA with comorbidities, in addition to enhancing their HIV care.

Photo Source: The Wright Center

Nevertheless, unlike hospital residency programs, THC funding is not guaranteed and comes from discretionary Congressional appropriations. There are 82 THC programs in the United States. Despite proven success, the program is consistently financially tenuous. Due to not having stable, long-term, reliable funding, some of the THC programs have been put on hold or stopped.[6] It was created under the Affordable Care Act in 2010 and will run out of funding in December if its appropriations funding is not replenished.

It is important to note that federal domestic discretionary spending includes Centers for Disease Control & Prevention (CDC) HIV prevention programs like the Ending the HIV Epidemic (EHE), RWHAP, ADAPs, National Institutes of Health (NIH) HIV/AIDS research, and even Housing Opportunities for Persons with AIDS (HOPWA).[1] President Biden’s fiscal year 2025 budget request eliminates barriers for Medicaid recipients to receive PrEP and proposes a program to guarantee PrEP for all uninsured and underinsured.[1] It also requests a new $10 million program to improve equity and civil rights through a DOJ program to eradicate outdated criminal statutes that target PLWHA.

The evolution of HIV is not stagnant or flat, nor should its funding be. The lives of PLWHA and efforts to end the HIV epidemic are too important to be left on unstable funding grounds due to the politicization of disease and misappropriation of scarce resources. House Republicans have expressed the desire to cut as much as 11% of a bill that supports HIV programs.[7] Failure to increase and innovate funding will adversely affect the progress that has been made as well as lead to avoidable poor healthcare outcomes and increased costs.

[1]  HIV.Gov. (2024, May 13). Federal HIV Budget. Retrieved from https://www.hiv.gov/federal-response/funding/budget

[2] Whitehead, S. (2024, June 19). Americans are living longer. Federal spending isn't keeping up. Retrieved from https://www.medpagetoday.com/hivaids/hivaids/110714?xid=nl_mpt_DHE_2024-06-19&eun=g1964022d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%202024-06-19&utm_term=NL_Daily_DHE_dual-gmail-definition

[3] Health Resources and Services Administration. (2023, December). HRSA Ryan White HIV/AIDS Program Parts and Initiatives. Retrieved from https://ryanwhite.hrsa.gov/about/parts-and-initiatives

[4] HIV.Gov. (2024, June 4). Aging with HIV. Retrieved from https://www.hiv.gov/hiv-basics/living-well-with-hiv/taking-care-of-yourself/aging-with-hiv#:~:text=Health%20Issues%20and%20Aging%20with%20HIV&text=In%20addition%2C%20while%20effective%20HIV,%2C%20renal%20disease%2C%20and%20cancer.

[5] Gallant, J., Hsue, P. Y., Shreay, S., & Meyer, N. (2017). Comorbidities Among US Patients With Prevalent HIV Infection—A Trend Analysis. The Journal of Infectious Diseases, 216(12).

[6] KFF Health News. (2024, June 13). Funding instability plaques program bringing doctors to underserved areas. Retrieved from https://www.usnews.com/news/health-news/articles/2024-06-13/funding-instability-plagues-program-bringing-doctors-to-underserved-areas?src=usn_tw

[7] Burke, J. (2024, May 21). Press Release: New CDC HIV Data Demonstrates the Impact of Flat Funding. Retrieved from https://hivhep.org/wp-content/uploads/2024/05/CDC-HIV-data-press-release-5.21.24.pdf

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

NASTAD Releases 2024 Monitoring Project Annual Report

By: Marcus J. Hopkins, Guest Contributor

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its 2024 National RWHAP Part B ADAP Monitoring Project Annual Report documenting key trends, challenges, and successes faced by state and territorial AIDS Drug Assistance Programs (ADAPs). This report is developed using information provided to NASTAD by state and territorial ADAPs through information requests, and the 2024 report includes information from 49 states, the District of Columbia, and Puerto Rico. No fiscal or programmatic data were provided by West Virginia, the U.S. Virgin Islands, or the Pacific Island Jurisdictions, including American Samoa, Guam, the Northern Mariana Islands, the Marshall Islands, Palau, and the Federated States of Micronesia.

Key finding from this year’s report include:

• Ryan White Part B programs saw an increase of 1.6% in their Congressional appropriation from Fiscal Year (FY) 2021 to FY2022, from $1.27 billion to $1.29 billion, while ADAP-specific funding provided by the Health Resources Services Administration (HRSA) remained flat at $900m. As NASTAD notes, federal awards alone are not sufficient to meet the needs of Part B programs or their clients;
• Pharmaceutical rebates constituted the largest proportion of the overall ADAP budget for FY2022 at 47%, compared to federal ADAP earmark funding at 34% (Figure 1);

Figure 1 - Total ADAP Budget, By Source, FY1996–FY2022

Photo Source: NASTAD

Note: Rebates are tracked separately from front-end discounts and account for both repayment to ADAP from a manufacturer for a drug expenditure and any additional savings generated. 

Retrieved from National Alliance of State and Territorial AIDS Directors, 2024.

• Reporting ADAPs served a total of 235,615 clients in Calendar Year (CY) 2022, with California serving the most clients at 29,774;
• The percentage of ADAP clients served by ADAP-funded insurance programs increased from 42% in CY2021 to 44% in CY2022, matching for the first time the percentage of ADAP clients served by full-pay medication programs (also 44% in CY2022);
• The age demographics of clients served by ADAPs has shifted slightly as patients age, with clients aged 25-44 increasing from 39% to 40%, those aged 65+ increasing from 12% to 13% from CY2021 to CY2022. Adults aged 45-64 continue to represent the largest percentage of ADAP clients, at 44%, down from 46% in CY2021;
• A majority of the 51 ADAPs that provided information (34, n=67%) have opted to eliminate the six-month recertification requirement. The programs that have left that in place include: Alaska, Indiana, Kansas, Kentucky, Maryland, Massachusetts, Nevada, New Hampshire, North Carolina, Ohio, Oklahoma, Rhode Island, Texas, and Wyoming (NASTAD, 2024);
• 84% of clients served by the ADAPs achieved viral suppression of their HIV (i.e., they achieved viral loads of <200 replicating copies). Clients who received ADAP-funded insurance only or a combination of ADAP-funded insurance and full-pay medication program services were more likely to achieve viral suppression than those who received only full-pay medication program services (Figure 2).

Figure 2 - ADAP Clients Served by Program, by Viral Load, CY2022

Photo Source: NASTAD

Note: Retrieved from NASTAD, 2024.

• 17 of the 51 responding ADAPs reported that less than 80% of their enrolled clients had achieved viral suppression—Alabama, Alaska, Arkansas, Colorado, Connecticut, the District of Columbia, Florida, Georgia, Kentucky, Minnesota, Mississippi, New Jersey, Palau, Pennsylvania, Texas, Vermont, and Wyoming (Figure 3).

Figure 3 - ADAP Viral load Suppression Rate, by Clients Served, CY2022

Photo Source: NASTAD

Note: Retrieved from NASTAD, 2024.

Discussion

State and territorial ADAPs continue to serve as a vital component of HIV care and treatment in the United States, serving nearly a quarter-million Persons Living with HIV/AIDS (PLWHA). While the nation’s PLWHA population, as a whole, suffers from astonishingly low rates of HIV viral suppression, with just 57% of PLWHA achieving viral suppression—one of the lowest rates of viral suppression among comparable high-income countries (Figure 4).

Figure 4 - HIV Viral Suppression Rate in U.S. Lowest Among Comparable High-Income Countries, 2020 or Latest Year

 

Photo Source: KFF

Note: Retrieved from KFF, 2022.

The consistent component of these comparable countries that PLWHA do not enjoy in the United States is that PLWHA enjoy Universal Healthcare coverage in each of them. The AIDS Drug Assistance Program is one of the few programs that provides relatively comprehensive medication coverage for PLWHA, and if the findings in the NASTAD annual report are any indication, the provision of those programmatic services is highly successful in helping patients achieve viral suppression compared to patients who are not beneficiaries of those services.

Each of these nations also provides significantly more permissive and generous social support systems that include relatively easily accessible housing, nutrition, and financial assistance programs, whereas PLWHA in the United States continue to face barriers to viral suppression.

Among adults who reported feeling that they did not receive enough HIV care, nearly all (95.6%) reported experiencing at least one barrier to accessing care and treatment, and nearly two-thirds (62.6%) reported more than one barrier (Dasgupta, Tie, Beer, Fagan, & Weiser, 2021). 50% of respondents in the Dasgupta study indicated having life circumstances that impeded their ability to access care, and 34.5% of those respondents indicated that they faced problems with money or insurance coverage.

It is further interesting that viral suppression rates amongst ADAP recipients in most of the Deep South fall below 80% of ADAP clients. There are several potential factors that may contribute to these lower levels of success among ADAPs, most of which have little to do with the programmatic services, themselves, including (but not limited to):

• The accessibility of HIV care and treatment providers local to patients, including hours of operations, proximity to patients, and the quality of care patients receive;
• A lack of reliable public or private transportation to and from appointments;
• Geographic or weather barriers that may make treatment inaccessible during storm seasons;
• Poverty-driven barriers, including unstable or unaffordable housing, the inability to afford food, or the inability to afford utilities that forces patients to choose between affording to live and affording medications.

Equally interesting are the low suppression rates of ADAP recipients in northeastern states, such as Connecticut, New Jersey, Pennsylvania, and Vermont, while every other surrounding state boasts suppression rates of 80% or higher, with Connecticut and Vermont surrounded by states boasting 90% suppression rates or higher.

It is possible that lower suppression rates in these states may be the result of transportation or accessibility issues, but patients in those states generally experience fewer physical and transportation barriers than those living in the Deep South, which tends to be more rural, have fewer and less accessible public transportation options, and higher patient-to-provider ratios compared to the northeast.

Finally, while it is normal for some jurisdictions to not respond to NASTAD’s annual survey requests, the Pacific Island Jurisdictions seem to almost never respond. An examination of NASTAD reports dating back to 2019 showed that Americans Samoa, the Federated States of Micronesia, Guam, Marshall Islands, Northern Mariana Islands, and the Republic of Palau have failed to respond to survey requests every year. While the footprint of ADAP in these territories is relatively small compared to the contiguous states and Puerto Rico, it is still vital that we be able to gain insight into the operations and efficacy of ADAP programs in those jurisdictions.

This issue is not unique to NASTAD. In attempting to gather timely data about programs in those territories, ADAP Advocacy has encountered similar challenges when attempting to access government websites, eligibility requirements, and contact information for the Pacific Island Jurisdictions.

ADAP Advocacy will continue to monitor state and territorial ADAP reports.

References:

Dasgupta, S., Tie, Y., Beer, L. Fagan, J., & Weiser, J. (2021, October). Barriers to HIV care by viral suppression status among US adults with HIV: Findings from the Centers for Disease Control and Prevention Medical monitoring project. Journal of the Association of Nurses in AIDS Care, 32(5): 561-568. https://doi.org/10.1097%2FJNC.0000000000000249

KFF. (2022, June 03). HIV viral suppression rate in U.S. lowest among comparable high-income countries, 2020 or latest year. San Francisco, CA: KFF: HIV/AIDS: Slide. https://www.kff.org/hivaids/slide/hiv-viral-suppression-rate-in-u-s-lowest-among-comparable-high-income-countries-2020-or-latest-year/

National Alliance of State and Territorial AIDS Directors. (2023). 2023 national RWHAP Part B ADAP monitoring project annual report: Section 3: Meeting the need: Ensuring access to essential medicines for People Living with HIV/AIDS. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2023-rwhap-part-b-adap-monitoring-report/section-3

National Alliance of State and Territorial AIDS Directors. (2024). 2024 national RWHAP Part B ADAP monitoring project annual report. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2024-rwhap-part-b-adap-monitoring-report

National Alliance of State and Territorial AIDS Directors. (2024). 2024 national RWHAP Part B ADAP monitoring project annual report: Section 1. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2024-rwhap-part-b-adap-monitoring-report/section1

National Alliance of State and Territorial AIDS Directors. (2024). 2024 national RWHAP Part B ADAP monitoring project annual report: Section 2: Meeting the need: Ensuring access to essential medicines for People Living with HIV/AIDS. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2024-rwhap-part-b-adap-monitoring-report/section2

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

NASTAD Releases 2020 Monitoring Project Annual Report

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

In early June 2020, the National Alliance of State and Territorial AIDS Directors (NASTAD) released its “2020 National RWHAP Part B and ADAP Monitoring Project Annual Report”, and within, unveiled some interesting statistics.

In Calendar Year (CY) 2018, the Ryan White HIV/AIDS Program (RWHAP) provided service to 283,480 clients. This represents 26% of the estimated 1.1 million people estimated to be living with HIV in the U.S. (NASTAD, 2020). This represented a 16% increase from the 245,245 clients served in CY2017.  By comparison, in 2018, Medicaid was the largest source of coverage for adults living with HIV in the U.S., covering 40% of People Living with HIV (PLWH) (Dawson & Kates, 2020).

A more interesting revelation is how those clients are access healthcare via the RWHAP’s AIDS Drug Assistance Program (ADAP). Of the 242,727 clients who received services via ADAP in CY2018, 54% of them did so using insurance (either public, or private insurance for which the ADAP program paid premium(s), deductibles, and/or cost-sharing/co-payments), whereas 46% benefited from the full-pay prescription program, only (NASTAD, 2020).

Addition interesting info are as follows:

RYHAP Part B:

• Among RWHAP Part B clients served during calendar year 2018, 49% had incomes less than 100% of the federal poverty level (FPL) whereas 12% of the general population were living at or below the FPL. By comparison, 53% of RWHAP Part B clients were reported as having incomes below 100% FPL in calendar year 2017.
• RWHAP Part B clients were also more likely to be people of color (57% vs. 23%), with the majority 82% of clients of color reported as Black/African American.
• By ethnicity, 21% of RWHAP Part B clients were reported as Hispanic/Latinx (vs. 18% in the general population).
• The majority of clients served identified as male (72%) whereas 26% were identified as female. Comparatively, 49% and 51% of the U.S. population in 2018 were reported as male and female, respectively. This difference is reflective of the disproportionate prevalence of HIV among men nationally; 76% of all adult PLWH in 2017 were male.
• One percent of RWHAP Part B clients were reported as transgender in CY2018, 86% of whom identified as trans women, 3% as trans men, and 10% as transgender - other.

ADAP:

• Forty percent of ADAP clients served in CY2018 had incomes below 100% FPL, 13% less than those served by RWHAP Part B (53%).
• In 2017, 40% of all RWHAP clients were enrolled in Medicaid.
• 44% of ADAP clients were reported as people of color – slightly less than the 57% of RWHAP Part B clients.
• A greater proportion of ADAP clients (89%) were Black/African American, compared to 82% of RWHAP Part B clients.
• 27% were of Hispanic/Latinx ethnicity (vs. 21% among RWHAP Part B clients).
• By gender, ADAP clients were more likely to be male than those PLWH served by RWHAP Part B; 77% of ADAP clients were reported as male, 21% as female, and 1% as transgender.
• Among transgender ADAP clients, 84% were reported as trans women, 3% as trans men, and 13% as transgender – other.

It is clear, from NASTAD's reporting, that the Ryan White HIV/AIDS Program continues to serve a vital role in ensuring that PLWH in the U.S. continue to have access to the essential healthcare and medication coverage and services necessary to reach viral suppression and the elimination of HIV in the United States. The report can be downloaded online at https://www.nastad.org/PartBADAPreport.

References:

• Dawson, L. & Kates, J. (2020, July 09). Insurance Coverage and Viral Suppression Among People with HIV in the United States, 2015-2018. 4. Washington, DC: Kaiser Family Foundation: Charts & Slides. https://www.kff.org/slideshow/insurance-coverage-and-viral-suppression-among-people-with-hiv-in-the-united-states-2015-2018/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.