Ryan White Programmatic Funding Balances on a Precarious Precipice

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

When then becomes now. In 2013, a large group of HIV advocates, activists, care providers, community organizations, pharmaceutical companies, and patients living with HIV/AIDS (PLWHA) gathered in Washington, DC, to address what they saw as a crisis: that the Ryan White Cares Act would be reopened and gutted by the then-Republican-majority.

Photo Source: ADAP Advocacy

Those fears never came to pass, in no small part because of a mutual agreement to simply not mention that the act needed to be reauthorized because there was no sunset provision—a provision that automatically repeals or terminates a law—and just pray that it would be forgotten. Disagreements aside, stakeholders agreed that with no clear path ahead, the best strategy was “keeping our heads down and pray no one notices us,” as the late Bill Arnold summarized.

It’s now 2026, and once again, the specter of a collapse is once again upon us. This time, political inaction, combined with accusations of purported malfeasance, appears to be the culprit. What previously worked is no longer a viable option, since HIV-related services have been in the crosshairs since Elon Musk started gutting much of the safety-net under the guise of government “efficiency,” regardless of the harm being caused to patients, families, neighborhoods, and communities.

State AIDS Drug Assistance Programs (ADAPs) across the U.S. are facing unprecedented budgetary shortfalls, with multiple states opting to implement “cost containment” measures, including (but not limited to) cutting income eligibility levels, requiring in-person recertification, cutting formulary coverage, and introducing per-patient expenditure caps, in an effort to keep their programs open for as many people as possible (Hopkins, 2026). The HIV community has been in similar predicaments, such as the “ADAP Crisis” that impacted over 10,000 patients between 2010-2012, but something about this crisis just feels different.

Why?

Because the number of PLWHA continues to increase, while federal funding remains flat and state-level funding decreases. And they’re living longer

According to the most recent report from the National Alliance for State and Territorial AIDS Directors, an average of 52% of all state ADAP budgets is derived from pharmaceutical and manufacturer rebates (NASTAD, 2026). This is a significant change from 2008, when federal funding accounted for 51%, state funding for 21%, and rebates for 21% (Figure 1).

Figure 1 - Total ADAP Budget, By Source, FY1996–FY2024

Photo Source: NASTAD, 2026

Meanwhile, state funding has decreased to just 4% across the country, while the federal funding has remained relatively flat for a decade. For many programs, this has the potential to spell doom, as baseline budgets make using a rebate model—where programs pay the list price of medications upfront and are reimbursed the difference between the list price and the 340B Drug Pricing Program purchase price—a precarious endeavor. If the funds aren’t available to front-load those purchases, how will the programs do so and continue to provide services?

The answer is increasingly looking to be, “They can’t.”

In addition to being hit hard by funding shortages, ADAP programs, which have been authorized to pay for enrollees’ commercial insurance premiums, deductibles, and co-pays rather than using a full-pay medication model, have been struggling to keep up with the exponential annual increases in insurance costs foisted upon patients as yet another result of political inaction and malfeasance.

Since 2014, the average premium for an Affordable Care Act (ACA) Marketplace benchmark plan has risen from $273/month to $625/month in 2026 (Figure 2).

Figure 2 - Marketplace Average Monthly Benchmark Premiums, 2014-2026

Photo Source: KFF, 2026

These marketplace benchmark trends coincide with the aforementioned flat federal funding, decreasing state funding, and increased ADAP enrollment following the winddown of the expanded Medicaid access allowed during the COVID-19 pandemic, which led to a roughly 30% increase in enrollment from Calendar Year 2022 (CY2022) to CY2024 (NASTAD, 2026).

Essentially, as premiums become increasingly unaffordable, enrollees who had previously relied on Ryan White and ADAP for co-pay assistance while paying their own premiums have, due to rising costs, been forced to turn to ADAP for assistance with premiums, deductibles, and co-pays.

What Does This Portend?

None of these circumstances on their own would be ideal, but in combination, ADAPs are, for the first time in over 12 years, considering implementing waitlists for services.

For those who don’t remember, ADAPs once resorted to leaving patients in need of treatment on state waitlists to gain access to funding. Essentially, the only way to get access was for someone to become ineligible or die. Over 10,000 PLWHA languished on waiting lists in 13 states, and several of them died; the community pleaded for help.

The threat of these once again becoming a reality has prompted concerns about the collapse of the program altogether, with a recently released analysis projecting over 117,000 new HIV diagnoses over 5 years if the program ends, and an additional 68,000+ diagnoses if the program is interrupted for 2.5 years (Haelle, 2026). No clearer example exists than what is happening in Florida.

A recent analysis present at the Conference on Retroviruses and Opportunistic Infections (CROI) found that, should the Ryan White HIV/AIDS Program collapse, the projected number of new HIV diagnoses is likely to increased by 73% in 30 states, with the hardest hit states being Colorado, South Carolina, Missouri, Tennessee, Kentucky, Alabama, Illinois, and Wisconsin (Schnure et al., 2026).

What Can Be Done?

At this point, most state legislative sessions have ended or are winding down, essentially making the prospect of securing state-level funding an unlikely avenue. Additionally, given the Trump Administration and the current composition of Congress, there is little evidence that positive momentum can be built to secure additional federal funding.

NASTAD is pushing for a $175 million increase in the federal appropriation to address the shortfalls. NASTAD's recent policy brief reads: "Of the $175 million increase, $75 million should be allocated through the ADAP base funding awards, and $100 million should be added to the ADAP Emergency Relief Funding, bringing those awards to a total of $175 million."

In the meantime, policy experts, advocates, and activists are working behind the scenes to mitigate the current and impending funding disasters. 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] Dawson, L. & Kates, J. (2026, March 02). Constrained Budgets Lead States to Restrict HIV Drug Access Through Ryan White. Washington, DC: KFF: HIV/AIDS. https://www.kff.org/hiv-aids/constrained-budgets-lead-states-to-restrict-hiv-drug-access-through-ryan-white/

[2] Haelle, T. (2026, February 27). Study Warns of Large Increase in New HIV Cases in U.S. if Ryan White Program Ends: Colorado and several Southern and Midwest states would see the biggest increases in incidence. New York, NY: MedPage Today: Meeting Coverage: CROI. https://www.medpagetoday.com/meetingcoverage/croi/120084

[3] Hopkins, M. J. (2026, March 12). NASTAD Releases 2026 ADAP Monitoring Report: Warning Signs Ahead. Nags Head, NC: ADAP Advocacy: Blog. https://adapadvocacyassociation.blogspot.com/2026/03/nastad-releases-2026-adap-monitoring.html

[4] KFF. (2026). Marketplace Average Monthly Benchmark Premiums. Washington, DC: KFF: State Health Facts: Affordable Care Act: Health Insurance Marketplaces. https://www.kff.org/affordable-care-act/state-indicator/marketplace-average-benchmark-premiums/?activeTab=graph&currentTimeframe=0&startTimeframe=12&selectedRows=%7B%22wrapups%22:%7B%22united-states%22:%7B%7D%7D%7D&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D

[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. (2026, February 27). ADAP Fiscal Year 2027 Funding Request. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/resources/adap-fiscal-year-2027-funding-request

[7] Schnure, M., Forster, R., Jones, J. L., Lesko, C. R., Batey, D. S., Butler, I., Ward, D., Musgrove, K., Althoff, K. N., Jain, M. K., Gebo, K. A., Dowdy, D. W., Shah, M., Kasaie, P., & Fojo, A. T. (2026). HIV Incidence Could Rise by 73% in 30 States if Ryan White Ends: A Simulation Study, Abstract [Conference abstract]. 2026 Conference on Retroviruses and Opportunistic Infections, Denver, Colorado, United States. https://www.natap.org/2026/CROI/croi_100.htm

Are 340B Covered Entities Sacrificing Affordable Care for Executive Compensation?

By: Brandon M. Macsata, CEO, ADAP Advocacy, Guy Anthony, Chair, ADAP Advocacy 340B Patient Advisory Committee, and Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

The 340B Drug Pricing Program was founded on a straightforward accountability agreement: in return for significant discounts on outpatient medications, safety-net providers would “stretch scarce federal resources” to make healthcare more accessible and affordable for those most in need. However, as eligibility for the 340B Program has broadened and revenues have soared, a pressing concern has emerged: are some covered entities diverting a patient-focused initiative to fund executive compensation (CEO compensation at hospitals increased by an average of 197.2%, while compensation for CEOs at organizations that provide care for patients living with HIV/AIDS increased by 219.9%) rather than reducing costs, expanding services, and supporting vulnerable communities?

The long and short of it is YES.

Since 2023, ADAP Advocacy, in collaboration with the Appalachian Learning Initiative (APPLI) and the Community Access National Network, has audited Form 990 federal filings with the Internal Revenue Service, which have uncovered troubling trends. It involved a multi-year audit of 170 organizations eligible to participate in the 340B Program as “covered entities”—non-profit healthcare providers of various types who qualify to purchase certain outpatient prescription drugs at significantly lower prices, sell them to lower-income and poor patients, and receive rebates from pharmaceutical companies for the difference between the list price of those drugs and the purchase price (Figure 1). 

The program’s financial gains are increasingly benefiting executive leadership rather than bedside care. We believe that a program designed to stretch scarce resources shouldn’t be stretching paychecks faster than it stretches care.

What we’ve discovered has been astonishing.

Across 170 covered entities audited (all averages exclude outliers):

• Annual revenues after the first year of eligibility increased from the year prior to receiving eligibility by an average of 12.2%, while annual CEO compensation increased by an average of 28.9%.
• From the year prior to eligibility to the most recent 990s on file, annual revenues increased by an average of 609.5%, while annual CEO compensation increased by an average of 221.3%.
• CEO compensation at hospitals increased by an average of 197.2%, while compensation for CEOs at organizations that provide care for patients living with HIV/AIDS increased by 219.9%. Similarly, at other types of organizations, including (but not limited to) Federally Qualified Health Centers, Consolidated Health Centers, and STD clinics, CEO compensation increased by an average of 230.4%.

All data from ADAP Advocacy’s findings are available online at https://340bmap.org.

Figure 1 – The Complex Ecosystem of 340B Drug Pricing

Photo Source: Martin, 2025

What differentiates HIV care providers who run AIDS Drug Assistance Programs (ADAPs) under the Ryan White HIV/AIDS Program is that ADAP providers are required to report detailed records about the amounts of 340B revenue they receive and how those revenues are used. Many of these ADAPs also operate under a rebate model rather than the upfront payments used by nearly all other covered entities participating in the program. They’ve successfully used these rebates to expand access to care and treatment, while remaining accountable. 

Essentially, they’re required to show their work.

Hospitals, however, are not required to provide any public-facing information about their 340B drug sales, revenues, or how those revenues are used, which has repeatedly led to those revenues—statutorily required to be used to improve the access and affordability of healthcare services for poor patients—being misappropriated for other purposes, including the opening or acquisition of new facilities (known as “child sites”) in affluent neighborhoods where profits will be higher, unnecessary, decorative construction inside hospitals, to increase CEO and other executives’ salaries, and other purposes.

In fact, 10 of the 104 hospitals we audited saw CEO compensation increase by 500% or more from the year prior to their eligibility for the 340B program to their most recent filings, with one hospital increasing its CEO compensation by 2,803.8% in just 16 years.

It is symbolic of a larger trend within the hospital ecosystem, as eloquently noted by Dutch Rojas in a recent Substack post in The Rojas Report: The Charity That Pays Like Wall Street. Supplemental Executive Retirement Plans, or SERPs, are "how nonprofit hospitals pay their executives more than Wall Street pays its bankers" (Rojas, 2025).

Meanwhile, the United States faces a critical national nursing shortage that will leave American citizens at significant risk. This shortage will increase as a result of recent moves by the Trump Administration to declassify nursing as a “professional” degree, thus making it more difficult for aspiring nurses to receive student loans. And all of this while CEOs—who virtually never engage with actual patients or provide any sort of healthcare service—are able to demand salaries so high that most Americans cannot conceive of the number, and nobody blinks an eye.

We argue that 340B dollars, regardless of the covered entity eligible to receive them, should be directly tied to improving patient access and affordability. One way to improve services, for example, would be to use those funds to hire more nurses. Or increase the pay of the existing nurses. Alternatively, keep rural hospitals open rather than closing and consolidating them.

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.

References:

[1] Martin, K. (2025, August 06). The 340B Drug Pricing Program: How It Works and Why It’s Controversial. Commonwealth Fund. https://doi.org/10.26099/210h-wv98

[2] Rojas, Dutch. (2025, January 29). The Charity That Pays Like Wall Street. The Rojas Report. https://dutchrojas.substack.com/p/the-charity-that-pays-like-wall-street?utm_campaign=email-post&r=3z1yhv&utm_source=substack&utm_medium=email

HRSA Mired in Uncertainty, Instability, and Confusion; Patient Advocates Increasingly Concerned

By: Ranier Simons, ADAP Blog Guest Contributor

The Trump Administration's developing policies regarding population health and well-being continue to propagate uncertainty, instability, and confusion amidst entities that affect optimal health outcomes for all citizens. Notably, there is a concerted effort to dismantle infrastructure instituted by previous administrations that made the Ryan White HIV/AIDS Program (RWHAP) and other federal health programs more inclusive of the needs of marginalized communities. A recent Special Bulletin sent out by the Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB) does not immediately effect change. Yet, some stakeholders are concerned about its possible implications (Engels, 2025). But numerous things unfolding simultaneously have yielded chaos.

Photo Source: CNS photo/Nancy Phelan Wiechec

The HRSA HAB special bulletin contained a 'Dear Colleague' letter from HRSA Administrator Thomas J. Engels addressed to RWHAP program awardees and stakeholders, which includes many national partners and federal colleagues. The letter began by extolling the virtues and successes of RWHAP and how it is a lifeline for people living with HIV/AIDS (PLWHA). It then proceeded to criticize RWHAP policies under the Biden administration. The letter states, “…under the previous administration, certain interpretations of RWHAP’s allowable uses, as outlined in prior communications, co-opted the program’s patient-centered mission in favor of radical ideological agendas and policies. Congress envisioned RWHAP as a lifeline for those battling HIV and AIDS, not as a vehicle for broader social or medical experimentation. More to the point, this politicized commandeering risks diverting resources away from HIV/AIDS patients, whose lives depend on RWHAP’s core medical services.” (Engels, 2025)

The letter contained a direct footnote in reference to what it described as ‘radical ideological agendas and policies’ (Engles, 202). The footnote was guidance from the U.S. Department of Health and Human Services (HHS) from December 2021, stating that RWHAP funds could be used to support gender-affirming care through RWHAP core medical and support service categories (Cheever, 2021). The 2021 guidance defined the appropriate services as those outlined in Policy Clarification Notice #16-02 Ryan White HIV/AIDS Program Services: Eligible Individuals & Allowable Uses of Funds (PCN# 16-02).

Some State AIDS Drug Assistance Programs (ADAP) have gender-affirming hormone therapy as part of their formulary. Holistic treatment of transgender individuals living with HIV also includes services such as mental health counseling for gender dysphoria, substance use disorder treatment, and even housing and case management services. These services are necessary to support anti-retroviral treatment adherence and positive HIV-related healthcare outcomes in transgender individuals, hence why the Biden administration issued the policy guidance (Cheever, 2021).

After the direct reference to transgender HIV care as a radical policy, the Special Bulletin further adds, “…HAB reaffirms that RWHAP funds shall be marshaled exclusively toward evidence-based interventions proven to combat HIV, sustain viral suppression, and improve the quality of life for those living with the disease.” It defines those as outpatient care and support services, including but not limited to providing HIV medications and housing assistance. Interestingly, the letter emphasizes that RWHAP funds are not authorized for things outside of the scope of PCN# 16-02, the same notice utilized by the Biden administration’s 2021 policy guidance, including affirming gender-affirming care under RWHAP (Engels, 2025).

Photo Source: The New York Times

Specifically highlighting gender-affirming care with the implication that it is radical and not authorized, utilizing guidance that defined it as appropriate, essentially to say it is not appropriate, is contradictory and nebulous. The Dear Colleague letter is not a policy implementation, yet it leaves enough doubt for many RWHAP recipients to be concerned about the services they are providing. According to 2021 data, 11,600, or 2.1 percent of RWHAP patients, are transgender (Cheever, 2025). That is a large population of vulnerable individuals potentially losing certain needed services.

The present HRSA RWHAP messaging emphasis on gender-affirming care is in alignment with the Trump Administration’s delegitimization of transgender lives and transgender health. Presently, the administration is appealing a block on its desired ban of openly transgender service members in the military (Pierson, 2025). The administration’s attorneys argue circularly that the ban is not based on transgender identity but on the medical condition of gender dysphoria. They purport that those who identify as transgender can still serve if they do not have gender dysphoria or openly live as a sex different than their sex at birth. 

The Centers for Medicare and Medicaid Services (CMS) issued a letter on April 11, 2025, addressed to state Medicaid Directors, urging states not to use Medicaid funds for gender-affirming care for minors, highlighting hormone treatments, puberty blockers, or surgeries (Snyder, 2025). The letter refutes the legitimacy of gender-affirming care for minors. It further adds that “State Medicaid programs have a responsibility to ensure that payments are consistent with 'efficiency, economy, and quality of care' under Section 1902(a)(30)(A) of the Social Security Act…CMS is committed to following the highest standards of care and adhering closely to the foundational principles of medicine, especially when it comes to doing no harm to America’s children.”

Additional alarm stems from the HHS FY2026 discretionary "budget passback" that was leaked last week. The budget passback is a draft document that gives an informed look at the priorities of the Trump Administration’s Office of Management and Budget (OMB) as it prepares a budget request for Congress. The Washington Post reported that while Congress typically ignores the President's budget request, given that the current political environment is not typical, it’s important to investigate its drastic transformative blueprint (Sun et al., 2025).

Source: The Washington Post

ADAP Advocacy contacted Tim Horn, Director of Medication Access for NASTAD, for insight on the 64-page documents' details associated with infectious disease programs. The leaked budget proposal includes provisions to formally eliminate the CDC’s Division of HIV Prevention, Ending the HIV Epidemic (EHE) funding across the government, all funding for Part F of the Ryan White/HIV AIDS Program, Minority AIDS Initiative Funding, and a significant amount of SAMHSA Substance Abuse Treatment Programs of National and Regional Significance (PRNS). The Washington Post also highlights that the proposal cuts the NIH budget by 40 percent, eliminating entities like the NIH National Institute on Minority Health and Health Disparities (Sun et. al, 2025).

Although the current flurry of activity is causing RWHAP great unease, Jen Laws, CEO of Community Access Action Network (CANN), offers insight for the immediate present. Concerning the HRSA Special Bulletin, he shared, “A ‘special bulletin’ is not formal guidance or policy of any kind. That would most assuredly constitute a final agency action and open the door to either adding this issue to existing suits regarding public health funding programs or a suit on its own. Here, RWHAP sub-recipients need to know that this is not binding guidance and that their service offerings should not be changed. Rather, it's a flag, a signal, if you will, on what the Administration intends to do.”

Ongoing RWHAP stakeholder stress is further exacerbated by the breakdown in infrastructural support offered to them. For example, HRSA abruptly cancelled the HAB National Partners meeting initially scheduled for April 14, 2025, without any explanation or details about rescheduling it. One provider stakeholder, speaking to ADAP Advocacy on the condition of anonymity, decried, "We're feeling very devalued and simply bracing ourselves for the other shoe to drop."

Vigilance is imperative in monitoring HRSA's navigation through the current administration's actions and possible changes to Medicaid. The lives of PLWHA and other marginalized communities and the health of the general population are at stake. Distinguishing enforceable actions from propagandized smoke screens will help maintain hope and enable sustained focus on targeted response.

[1] Cheever, L. (2021, December 2021). Dear Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/hiv-care/gender-affirming-care-rwhap.pdf

[2] Engels, T. (2025, April 7). Dear Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/about-program/letter-grantees-rwhap-4-2025.pdf

[3] Pierson, B. (2025, April 22). Trump administration pushes appeals court to enforce military's transgender ban. Retrieved from https://www.reuters.com/legal/government/trump-administration-pushes-appeals-court-enforce-militarys-transgender-ban-2025-04-22/

[4] Snyder, D. (2025, April 11). CMS Letter to State Medicaid Directors. Retrieved from https://www.cms.gov/files/document/letter-stm.pdf

[5] Sun, L., Johnson, C., Roubein, R., Achenbach, J., Weber,L. (2025, April 16). Internal budget document reveals extent of Trump’s proposed health cuts. Retrieved from https://www.washingtonpost.com/health/2025/04/16/hhs-budget-cut-trump/

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.

Despite Ongoing Chaos, Ryan White Program 2030 Plan Remains Relevant

By: Ranier Simons, ADAP Blog Guest Contributor

In December 2024, Ryan White HIV/AIDS Program (RWHAP) partners received a guidance letter about the Ryan White Program 2030 plan (RWP 2030) from the Health Resources Services Administration (HRSA). The guidance, in the form of a Dear Colleague Letter (DCL) did not include specific policy explanations or detailed implementation instructions, but rathe highlights of directives and unifying paradigms of action. Given the current political climate and the state of flux regarding public health programs and access to public health data on federal agency websites this letter might now be undermined. That said, it is also an acknowledgment of past successes and how they relate to future targets.

(Editor's Note: Some of the links included in the Dear Colleague Letter have already been scrubbed from their websites)

RWP 2030 maintains a focus on an efficacious, high standard of care for those presently benefiting from programs and services through the Ryan White HIV/AIDS Program (RWHAP). The DCL emphasizes the importance of increased efforts to find people living with HIV/AIDS (PLWHA) who are undiagnosed or who have fallen out of the care continuum and bring them into proper care. Data from August of 2024 indicates that 13 percent of the 1.2 million PLWHA in the U.S. are undiagnosed and unaware (HIV.GOV, 2024). That is roughly 156,000 individuals in danger of serious adverse health outcomes due to lack of treatment as well as the potential to unknowingly spread HIV. A combined 40 percent of PLWHA in the U.S. are undiagnosed or diagnosed and not receiving care. 

Great strides have been made regarding viral suppression, and a renewed focus on reaching untreated individuals is the RWP 2030’s aim to increase those numbers. From 2010 to 2023, viral suppression amongst those receiving care under the RWHAP increased from 69.5% to 90.6% (HRSA, 2024). Viral suppression does not happen overnight and is not a permanent self-maintaining endpoint. Reaching viral suppression requires consistent care, and maintaining it requires permanent care.

Source: HIV.gov

The DCL stresses the need for community-driven collaboration and planning. PLWHA live in populations and communities of significant heterogeneity. The RWP 2030 aims to equip people and entities with the resources, capacity-building tools, and training to create the infrastructures needed to meet the specific needs of identified communities. The letter states that success will require “collaboration across sectors, innovation in care delivery, and a commitment to addressing barriers to care” (HRSA, 2024). 

The RWP 2030 framework of leveraging partnerships, focusing interventions, and community engagement is the most effective mindset to have going forward (HRSA, 2024). Presently, there is much uncertainty concerning funding, policy, and potentially adverse effects of political expediency. The DCL reminds RWHAP recipients of the importance of being vigilant with the reevaluation of programs and services to maximize the allocation of efforts to meet locally identified needs. Monitoring is imperative to balance furthering the appropriate care of those already receiving RWHAP services and engaging people new and returning to care.

HRSA plans to release specific guidance and development of tools to support RWHAP recipients in realizing RWP 2030 goals. Some of the education on best practices for outreach, linkage to, and engagement in care is not available as many HIV resources, such as TargetHIV.org, are not available, having been removed from online access by the current administration as of the time of this blog. This fortifies the need for innovative measures of collaboration and the inclusion of non-traditional partnerships to strengthen infrastructures of care. In addition to training and resources, HRSA plans to hold a series of listening sessions in 2025 (HRSA, 2024). The goal is to facilitate exposure to a diverse range of perspectives and experiences associated with navigating the hurdles and pitfalls on the journey of ending the HIV epidemic.

Photo Source: HRSA HIV/AIDS Bureau

Program letters are not only a press statement or documentation for the purposes of public record. HRSA DCLs are a source of information, motivation, hope, and reassurance that RWHAP recipients are supported and are not isolated islands. Reminding entities of their mission and identifying the means to find the help they need is vital for programmatic success. How this plan plays out under the ongoing attacks on public health programs still remains to be seen.

[1] HRSA. (2024, December 20). Dear Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/rw-program-letter-2030.pdf

[2] HIV.GOV. (2024, August 15). U, S. Statistics. Retrieved from https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics#:~:text=Approximately%201.2%20million%20people%20in,sex%20with%20men%20(MSM)

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. 

'Ending the HIV Epidemic' Enhances RWHAP Service Delivery; Report

By: Ranier Simons, ADAP Blog Guest Contributor

The population of people living with HIV/AIDS (PWLHA) is not monolithic. Their demographics vary as much as their needs. The Ryan White HIV/AIDS Program (RWHAP) provides funding for many HIV care and support services supporting over half of the people diagnosed with HIV in the United States.[1] The program is a safety-net ‘last-resort’ source of funding for those designated as low-income, who have no insurance, who are underinsured, or who have insurance limitations. However, there are restrictions to what RWHAP funds can be used for, leaving some needs unsupported. The advent of the Ending the HIV Epidemic Initiative (EHE) in 2020 required additional funding support to enhance the service delivery system.

Photo Source: TargetHIV

The focus of the EHE is 47 geographic jurisdictions where HIV has the highest transmission rates. The additional funding for these areas allows RWHAP recipients to expand their capability to reach those unaware of their status and those who have fallen out of or are not in regular care. The EHE funds are more flexible in their allowed usage, enabling tailored approaches not included in RWHAP statutes. Not only do they support additional efforts to reach new and different subpopulations, but they also provide training to expand the workforce in those EHE-identified areas.

HRSA recently released a data report highlighting diverse characteristics and successful outcomes of clients served who are new to care or have been re-engaged to care with the providers who have received the EHE funds. The report also highlights EHE-funding-enabled efforts by providers.

One significant hurdle EHE funding enables providers to overcome is rapid initiation of care, which directly impacts viral suppression. This is notable since in 2022, EHE-funded providers served 22,001 clients new to care and 19,204 re-engaged into care.[1] Research shows that getting a person into treatment and care as soon as possible after HIV diagnosis provides the best possible health outcomes.[2] EHE funding enabled providers to link patients new to care to treatment more quickly after identification and/or diagnosis without having to wait until the completion of RWHAP eligibility assessments. The assessments can take up to 30 days. With the EHE funding, providers are guaranteed reimbursement if a potential client ends up not being RWHAP eligible.[1] Therefore, a newly diagnosed client can get into almost immediate care, has medication and care linkage, and is given the gift of time to navigate services if found ineligible.

Photo Source: HRSA

A notable data finding in the report is differences of socioeconomic factors. Regarding housing, newly diagnosed and re-engaging clients of EHE-funded providers faired poorer than RWHAP clients overall.[1] Approximately 15% of new EHE clients and 11% of re-engaged EHE clients were dealing with temporary housing situations compared to 6.9% of all clients served by the RWHAP.[1] Concerning unstable housing, 9.4% of new EHE clients and 4.3% of re-engaged EHE clients reported experiencing housing instability in contrast to 5.2% of all clients served by the RWHAP.[1]

The same trend continued regarding poverty. Approximately 68.9% of new clients and 64.3% of re-engaged clients of those served by EHE-funded providers lived at or below 100% of the federal poverty level compared to 58.6% of the overall RWHAP population.[1] This is indicative of comparative insurance trends between the two groups. Approximately 43.8% of new EHE clients had no health insurance coverage compared to 18.2% of overall RWHAP clientele.[1] New and re-engaged clients of EHE-funded providers also had lower rates of viral suppression. Approximately 79.2% of new clients and 85.1% of re-engaged clients had achieved viral suppression in contrast to 89.6% of RWHAP clients overall.[1] One caveat to this data metric is that the reported numbers are based on what is achieved by the end of the year. People who are new or returning to care may not have had time to achieve viral suppression yet.

In addition to client-level statistics, the data report details many ways EHE funding facilitated extended means of support, education, and expansion for recipients, helping them better target their communities' specific needs. EHE funding enabled providers to create programming and provide staffing in ways not permitted with RWHAP funds. Some clients were able to improve access to care by extending hours and days of service, providing funds for clients with transportation issues to use Lyft to get to facilities, and even using funding to pay for additional staff to meet needs that were currently not being satisfied.[1]

Providing community-specific services is paramount to assisting the populations the EHE is focused on. EHE funding allowed recipients to not only hire needed medical professionals but also train community members to provide services for their peers, such as client navigation and Linkage-to-Care coordination.[1] One of the recipients reported, “Data and Linkage to Care (DLTC) personnel are funded through EHE for aiding any person living with HIV in [our area with] accessing care and supportive services … Community Health Workers-Case Manager Supervisor [CHW-CMS] roles were implemented through EHE for expansion of HIV workforce within the state to assist with non-medical case management services. CHW-CMSs are not supported through the [redacted] Ryan White Part B and [AIDS Drug Assistance Program].”[1]

Photo Source: HRSA

In support of reaching EHE goals, EHE funding was also used by the RWHAP Part F AIDS Education and Training Center (AETC) Program to provide clinical training and organizational infrastructure education.[1] Regional AETC EHE-funded trainings were aimed at various providers and health professionals who were either new to servicing PLWHA or had limited experience due to low-volume exposure.[1] They also targeted professionals such as dentists, psychiatrists, nurse practitioners, and pharmacists. These practitioners encounter PLWHA and thus can benefit from training to enhance their ability to understand their clientele and provide appropriate care. EHE-funded AETC training topics included HIV prevention, PrEP education, STI screening in primary care, and even HIV stigma and discrimination education.[1]

The EHE initiative targets explicitly communities with the highest rates of HIV transmission. EHE funding creates new opportunities and avenues for those already utilizing RWHAP funds to do even more. Most importantly, EHE funds allow for services to be provided to clients in need who do not meet RWHAP income requirements. This data report shows that continued EHE funding is necessary to effectively end the HIV epidemic by enabling an arsenal of tools and solutions that are as varied as the populations in need.

[1] HRSA. (2024). Who We Are. Retrieved from https://ryanwhite.hrsa.gov/

[2] Benson, C., Emond, B., Romdhani, H., Lefebvre, P., Côté-Sergent, A., Shohoudi, A., Tandon, N., Chow, W., & Dunn, K. (2020). Long-Term Benefits of Rapid Antiretroviral Therapy Initiation in Reducing Medical and Overall Health Care Costs Among Medicaid-Covered Patients with Human Immunodeficiency Virus. Journal of managed care & specialty pharmacy, 26(2), 117–128. https://doi.org/10.18553/jmcp.2019.19174

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.  

Older Adults, Long-term Survivors, and Life-term Survivors in the Ryan White HIV/AIDS Program

By: Ranier Simons, ADAP Blog Guest Contributor

The lived experience of aging can be challenging. Those aging while living with HIV experience additional challenges as compared to the general population. According to the Centers for Disease Control & Prevention (CDC), in 2021, over 53 percent of people living with HIV/AIDS (PLWHA) were 50 years old or older.[1] In 2022, 48.2 percent of the 560,000 clients served by the Ryan White HIV/AIDS Program (RWHAP) were aged 50 or older.[2] As such, Health Resources & Services Administration (HRSA) recently issued a letter to RWHAP colleagues to not only bring awareness of the aging issues they should be addressing but also provide guidance and resources to help them more effectively serve the complex needs of aging PLWHA.

Photo Source: TargetHIV

As David “Jax” Kelly, President of Let’s Kick ASS (AIDS Survivor Syndrome) Palm Springs and Founder & CEO of the Aging and HIV Institute, points out, “The community aging with HIV consists of two distinct groups long-term survivors who have been living with HIV prior to 1995, and those who are over 50 and have been living with HIV after the discovery of the "cocktail" – antiretroviral medications that changed HIV/AIDS to a chronic condition rather than a diagnosis of imminent death.” According to Kelly, this aging cohort has specific medical, psychosocial, and support needs. The fact that more PLWHA are living longer increases the urgency of bolstering the infrastructure of HIV aging services.

Just like the general population, aging PLWHA experience age-related medical issues. However, older PLWHA have a higher prevalence of non-HIV comorbidities.[3] Thus, managing multiple morbidities and polypharmacy is a challenge.[3] Numerous medical issues mean treatment with multiple medications. The difficulty of navigating the medical aspects of multiple maladies is compounded by having to monitor drug-drug interactions of non-HIV-related medications with antiretroviral therapies. In addition to prescription drugs, older PLWHA may be taking over-the-counter medicines like pain relievers and supplements.[4] Studies also show that PLWHA develop age-related non-HIV medical issues earlier than the aging general population.[5] Some of the non-HIV-related conditions with higher prevalence among PLWHA are hypertension, kidney disease, dyslipidemia, and anemia.[5] One of the possible causes of higher rates of comorbidities is the side effects of long-term ART experienced by long-term survivors. 

Aging PLWHA also have specific psychosocial needs. According to Kelly, “Long-term survivors who experienced the trauma of the AIDS plague years when life expectancy was sometimes merely a few months are experiencing another wave of loss that may trigger survivor's guilt.” Social isolation is also an issue.[6] It is a challenge for the general population, but it can be extra challenging for PLWHA; especially those who may be LGBTQ. Aging PLWHA who happen to be LGBTQ have sometimes lost friends and people they consider chosen families. Due to ageism, sexism, racism, and homophobia, they live in self-isolation and are isolated, given that society does not place any priorities on ensuring their comfortable existence. 

Depression from physical and social isolation is not the only serious mental challenge aging PLWHA struggle with. Aging, in general, can sometimes bring on a bit of mental decline. However, cognitive impairment due to HIV-associated neurocognitive disorder (HAND) is also a known complication of HIV.[7] HAND can cause difficulty with concentration and memory, irritability, and motor skills issues.[7] In late, untreated stages, it can cause dementia. Psychosocial challenges and mental decline not only result in poor mental health but are barriers to maintaining medication adherence or achieving a high level of personal care.

Support is an area where much improvement is needed. The aging PLWHA population is diverse. People in their 50s, 60s, 70s, and up have different and dynamic needs. HIV care and geriatric care are siloed and not well coordinated. A technical expert panel put together by HRSA reported that in the U.S., primary care practitioners are not skilled in geriatric care, and geriatric practitioners are not skilled in HIV care.[8] It is imperative to have coordinated care efforts that are efficient, effective, and sustainable to encompass all the needs of aging PLWHA. 

Photo Source: HRSA | Flickr

Additionally, there are shortages of geriatricians, and many primary care practitioners don’t have the time to adequately address the needs of and perform the screenings needed for aging PLWHA.[8] HIV stigma and ageism, unfortunately, exist in the medical environment as well. Many clinicians, especially younger professionals, underestimate the mental and cognitive abilities of older PLWHA and don’t view them as sexual beings. Lacking knowledge and training of what it means to age with HIV results in not performing necessary medical screenings, overlooking thorough holistic needs assessments, and even inadequate tracking of health outcomes.

HRSA understands the interdisciplinary, multifaceted approach needed to effectively serve aging PLWHA. That is why the “Dear Colleague” letter was written. The letter references many tools and knowledge sources for RWHAP recipients to utilize. 

First and foremost, the letter reminds them that it is acceptable to use RWHAP funds to support aging PLWHA across various HRSA RWHAP core medical and support service categories.[2] However, HRSA is aware that there are some needs aging PLWHA have that RWHAP funds cannot directly address. For example, long-term care is not an allowable expense through RWHAP. To that end, HRSA refers RWHAP colleagues to connect with the Administration for Community Living’s (ACL) aging network grantees.[2] These community centers offer many services to help address holistic needs, such as transportation, housing, caregiver support, insurance counseling, and nutrition services.[2]

HRSA also provides reference and training materials to inform RWHAP recipients on ways to improve service delivery and structure their organizations. These are available through TargetHIV.org and the RWHAP AIDS Education and Training Center (AETC) Program’s National Coordinating Resource Center website.[2] A couple of these reference guides are: ‘Incorporating New Elements of Care’ and ‘Putting Together the Best Healthcare Team.’ Those two guides help identify screen assessments, screenings, and social needs of aging PLWHA, as well as guidance on how to effectively staff teams and build capacity.[9]

HRSA’s commitment to support the RWHAP is truly beneficial to the success of the programming. Tez Anderson, President & Founder, Let’s Kick ASS (AIDS Survivor Syndrome), expressed these sentiments regarding HRSA’s efforts: “As an advocate and someone living with HIV for over 40 years, I’m pleased HRSA is shining a light on the Ryan White Cares services available for the large and diverse cohort of older adults living with HIV and long-term survivors. As a group, we all have unique needs, and the priority must be to improve our quality of life. For those of us who have lived over half our lives with HIV, we agree living longer is a fantastic achievement, but living better is where hope lives.”

[1] NIH Office of AIDS Research. (2024, March 12). HIV and Older People. Retrieved from https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-and-older-people

[2] Cheever, L. (2024, August 16). Dear Colleague Letter on Older Adults, Long-term Survivors, and Life-term Survivors in the Ryan White HIV/AIDS Program. Retrieved from https://paetc.org/resources/dear-colleague-letter-on-older-adults-long-term-survivors-and-life-term-survivors-in-the-ryan-white-hiv-aids-program/

[3] Kong, A. M., Pozen, A., Anastos, K., Kelvin, E. A., & Nash, D. (2019). Non-HIV Comorbid Conditions and Polypharmacy Among People Living with HIV Age 65 or Older Compared with HIV-Negative Individuals Aged 65 or Older in the United States: A Retrospective Claims-Based Analysis. AIDS patient care and STDs, 33(3), 93–103. https://doi.org/10.1089/apc.2018.0190

[4] NIH Office of AIDS Research. (2019, December 18). Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. Retrieved from https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/special-populations-hiv-and-older

[5] Schouten, J., Wit, F. W., Stolte, I. G., Kootstra, N. A., van der Valk, M., Geerlings, S. E., Prins, M., Reiss, P., & AGEhIV Cohort Study Group (2014). Cross-sectional comparison of the prevalence of age-associated comorbidities and their risk factors between HIV-infected and uninfected individuals: the AGEhIV cohort study. Clinical infectious diseases: an official publication of the Infectious Diseases Society of America, 59(12), 1787–1797. https://doi.org/10.1093/cid/ciu701

[6] HRSA. (n.d.) Optimizing HIV Care for People Aging with HIV:  Incorporating New Elements of Care Reference Guide for Aging with HIV. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/aging-guide-new-elements.pdf

[7] Eggers, C., Arendt, G., Hahn, K., Husstedt, I. W., Maschke, M., Neuen-Jacob, E., Obermann, M., Rosenkranz, T., Schielke, E., Straube, E., & German Association of Neuro-AIDS und Neuro-Infectiology (DGNANI) (2017). HIV-1-associated neurocognitive disorder: epidemiology, pathogenesis, diagnosis, and treatment. Journal of Neurology, 264(8), 1715–1727. https://doi.org/10.1007/s00415-017-8503-2

[8] HRSA. (n.d.). Addressing the Health Care and Social Support Needs of People Aging with HIV: Technical Expert Panel Executive Summary. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/resources/hrsa-aging-tep-summary.pdf

[9] HRSA. (2022, February). Clinical Care Guidelines and Resources. Retrieved from https://ryanwhite.hrsa.gov/grants/clinical-care-guidelines-resources

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.