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

The Passing of Our Friend, Bill Arnold

By: Brandon M. Macsata, CEO, ADAP Advocacy Association 

Photo L - R: Bill Arnold, Brandon Macsata, Michael Pickering

At approximately 8:06 PM EST last evening, William "Bill" Arnold left this Earth as gracefully as he lived his life on it for his eighty-three years. 

Bill passed away peacefully in his home surrounded by Michael (his partner, seen above), Sally (his sister), Sue (his niece), and Lieden (his dog). It is truly a great loss for us, and our community, but at least Bill didn't suffer. Michael did get to share a nice moment with Bill in the morning watching the news while holding hands, as well as spending part of the day listening to Judy Collins. 

We will keep you updated as more details are shared by Michael about services for him.

In the meantime, we invite you to read the recent 2020 tribute written by Jeffrey R. Lewis: 

The Lion of Modern-Day HIV/AIDS Advocacy

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. 

The Lion of Modern-Day HIV/AIDS Advocacy

By: Jeffrey R. Lewis

HIV/AIDS advocacy has had many champions since the 1980s. Each leader made significant strides in raising awareness, tearing down stigma and building support services to combat the epidemic. Among them are Larry Kramer, Jeanne White-Ginder, Jeffrey Crowley, Mary Fisher, Debra Frazer-Howze, Elizabeth Taylor, Elton John, and Ron Woodroof to name just a few. Mild mannered and stoiac, the lion of modern-day HIV/AIDS advocacy movement is a man who is often overlooked, William “Bill” Arnold.

You won’t find Bill’s face on the cover of Time Magazine or the front page of The New York Times. Neither is he featured in HIV media publications, such as POZ Magazine or TheBody. No segment has aired on CNN’s Heroes or CBS’s 60 Minutes. Bill prefers it that way.

Yet, Bill’s contributions cannot be understated. His behind-the-scenes work changed the course of HIV/AIDS advocacy in the United States saving countless lives. Literally!

Bill with The Honorable Donna Christensen

As founder of the Community Access National Network (formerly the Ryan White CARE Act Title II Community AIDS National Network) and its groundbreaking National ADAP Working Group (“NAWG”), Bill’s efforts solidified the transformative work behind the creation of the AIDS Drug Assistance Program (“ADAP”) and its eventual federal funding. Created in the 1990s, when advocates were mistrustful of the pharmaceutical industry and critical of the government’s slow response to the epidemic. Likewise, the industry was skeptical of some of the advocacy community’s brass-knuckles tactics, however necessary they were at the time. During the mid-1990s, ADAP was receiving zero federal dollars, compared to the roughly $1.3 billion per year allocated today.

Bill Arnold made that happen by bringing three reluctant but vital partners together.

Industry brought its traditional "corporate thinking" business models to the table. Advocates brought a decade’s worth of pain (witnessing 50,000 AIDS-related deaths per year). Government agencies brought an institutional understanding of the political process and “traditional” problem based solutions. The result was one of the most effective community uprisings in our nation’s history. Bill was able to fascilitate a collaborative approach that combined stakeholders’ assets. It saved a generation!

Years later, predicting the “perfect storm” besieging ADAPs forcing thousands of people living with HIV/AIDS onto waiting lists for services. Bill founded the ADAP Advocacy Association and (modeled after NAWG’s stakeholder partnerships). Bringing a second organization into the fold!

Bill ensured that persons living with HIV/AIDS would always be at the center of the discussion. He opened the doors to a new generation of advocates empowered to find their voices in the fight against this devastating epidemic.

But that wasn’t all he did.

In 2011, Florida’s ADAP was on the verge of total collapse which would leave thousands of Floridians without life-saving medications. Unbeknownst to most people, Bill worked with the Heinz Family Philanthropies and Ken Trogdon to broker a solution averting a major public health crisis. More than 11,000 patients in eleven states got the medications they needed as a result.

Few pieces of HIV-specific legislation have passed through Congress without Bill’s fingerprints somewhere on them. It’s rare for community healthcare leaders to remain on the White House Domestic Policy Counsel’s speed dial the way Bill has.

This year, remember Bill Arnold. A healthcare hero whose determination, passion, and relentlessness saved tens of thousands of lives by simply caring.  Bill is not a collector of bones or souls, rather of hearts and minds.

Editor's Note: Jeffrey Lewis is the President of Legacy Health Endowment in Turlock, California.  The views expressed are his own.

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.