By: Brandon M. Macsata, CEO, ADAP Advocacy & Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy
ADAP Advocacy hosted its Health Fireside Chat retreat in Pittsburgh, Pennsylvania, with key stakeholder groups to discuss the adverse impact on patient care caused by the emerging financial crisis facing state AIDS Drug Assistance Programs (ADAP). The Health Fireside Chat was held on Friday, August 14th, and convened as part of its grassroots advocacy campaign, 'ADAP Saves Lives: End the Wait', in response to the resurfacing of ADAP waiting lists—now affecting over 1,000 clients. Nearly two dozen diverse health policy stakeholders attended the event.
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| Photo Source: Getty Images |
The ADAP Crisis discussion —including waiting lists in two states, cost containment measures in over one dozen states, a summary of the fiscal health and stress of the programs nationwide, and patient fears over not having access to their medications—was designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:
- Kate Abel, Merck
- Michelle Anderson, Narrative Power Institute LLC (ADAP Advocacy consultant)
- Guy Anthony, Black, Gifted & Whole Foundation (ADAP Advocacy Board Co-Chair)
- Scott Bertani, HealthHIV
- Duane Binion, True T Pittsburgh
- Erin Bradshaw, Patient Advocate Foundation
- Jeffrey S. Crowley, O’Neill Institute
- Jose De Marco, ACT UP Philadelphia
- Moira Foster, Pennsylvania Department of Health, Division of HIV Health
- John Haines, Pennsylvania Department of Health, ADAP
- Kathie Hiers, AIDS Alabama (retired)
- Marcus J. Hopkins, Appalachian Learning Initiative (ADAP Advocacy consultant)
- Tim Horn, NASTAD
- Amanda Kornegay, Kornegay Consulting LLC (ADAP Advocacy consultant)
- Stephanie Knupsky, PWN Pennsylvania
- Brandon M. Macsata, ADAP Advocacy
- Tom McDaniels, HIV-HEP Policy Institute
- Judith Montenegro, Latino Commission on AIDS
- Steve Novia, ViiV Healthcare
- Michiel Peters, Global Coalition on Aging
- David Spears, Magic Box LLC (ADAP Advocacy consultant)
To level set and provide background for discussions, attendees are sent suggested readings in advance. The following are just a few from the thorough list provided for this session:
- ADAP Watch – July 2026
This report tracks the fiscal health of AIDS Drug Assistance Programs across 43 reporting jurisdictions. It shows 15 ADAPs projecting budget deficits, 23 reporting balanced budgets, 5 anticipating surpluses, and active waiting lists in Iowa and Utah.
Source: National Alliance of State & Territorial AIDS Directors - ADAP Crisis Threatens Access to Lifesaving HIV Care
This Quick Take warns that the AIDS Drug Assistance Program (ADAP), a foundational part of the HIV care safety net, is under growing strain.
Source: O’Neill Institute | Georgetown Law - Merck Announces New Agreement with ADAP Crisis Task Force to Improve Access and Care for People Living with HIV
Agreement will help state ADAP programs provide access to IDVYNSO™ (doravirine/islatravir) for eligible individuals.
Source: Merck - Thousands Of Americans Are Set To Lose Access To HIV Medication And Care
[Podcast: 42-Minute Listen]
Source: NPR - The ADAP “Perfect Storm” Returns; Over 1,000 Patients Being Denied Care
What’s old is new, again!
Source: ADAP Advocacy
The Health Fireside Chat focused on the issues facing the nation's state AIDS Drug Assistance Programs (ADAP), with special attention to how the funding paradigm has shifted over the past 20 years.
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| Photo Source: ADAP Advocacy |
[Tim Horn, right, and Steve Novis, left]
Tim Horn, Director of Medication Access at the National Alliance of State and Territorial AIDS Directors (NASTAD), led the discussion and presented data from state ADAPs to NASTAD for calendar year 2025. While these data won't be published until 2027, Horn explained that they point to trouble ahead:
- Enrollment in state ADAP has increased, likely due to a combination of the introduction of the Ending the HIV Epidemic (EHE) program and the ending of the Medicaid Continuous Enrollment provision introduced during the COVID-19 pandemic to ensure that patients were not disenrolled
- Per-client drug expenditures have increased 1.5% annually from 2019 to 2025
- Per-client insurance premium expenditures have increased 8.3% annually from 2019 to 2025, and increased by 22% from Quarter 1 2025 to Quarter 1 2026. Double-digit increases are expected again in 2027
- Despite a decrease in enrollment from 2024 to 2025, costs increased in prescription drug costs (2.6%), premium expenditure (17.1%), and total core expenditures (3.0%)
- From 2019 to 2025, per-client costs increased 9.6%, and per-client insurance premiums increased 61.3%. Total spending increased 55.7%
Horn also explained that the ~$75 million in ADAP Emergency Funds have remained stagnant for several years, but the number of state ADAPs applying has increased from an average of ~8 states each year to 34, making that $75 million significantly less impactful.
Additionally, federal ADAP funding has remained unchanged at $900 million per year since 2014, even as the program costs $2.4 billion annually. Most state ADAPs cover that difference through 340B Drug Pricing Program rebates, which now account for 52% of ADAP budgets.
This reliance on rebate funding places state ADAPs in the precarious position of relying upon private industries to essentially fund a government program.
Of significant concern to Horn is the fact that there is no specific carveout for Persons Living with HIV/AIDS (PLWHA) in the Medicaid work requirements imposed by the federal government, meaning that PLWHA who are currently enrolled in state Medicaid programs may be kicked off of Medicaid for being unable to work or overcome the significant administrative (paperwork) burden placed upon them in order to prove that they are meeting the work requirements.
This shift in Medicaid policy is likely to result in PLWHA falling back on state ADAPs as they are disenrolled from Medicaid, further straining already limited budgets.
Horn also highlighted that the shift to purchasing health insurance for clients, once heralded as a significant cost-saving measure for state ADAPs compared with the direct purchasing model, is becoming less cost-effective as premiums, deductibles, and co-pays increase.
After Horn's initial presentation, attendees discussed their myriad concerns about the state of ADAP and access to HIV care. Stephanie Knupsky of Positive Women's Network PA summed it up best:
"I am scared. I listen to [Tim Horn's data] and all I can think about is how it feels like our voices are being suffocated."
"I am scared. I listen to [Tim Horn's data] and all I can think about is how it feels like our voices are being suffocated."
Fear, in fact, was one of the primary sentiments expressed at the Pittsburgh FSC. How was the fear summarized during the day's discussions?
- Fear that the Trump Administration and MAGA Republicans are purposely trying to destroy social safety net programs like Medicaid, SNAP, and ADAP;
- Fear that Black and Brown Americans are being specifically slandered and targeted in an attempt to instill so much fear in them that they stop attempting to enroll in these programs;
- Fear that immigration policies are going to result in even worse health outcomes for non-White populations;
- Fear that patients will fall out of care and services;
- Fear that the loss of access to HIV medications could result in the emergence of multidrug-resistant strains of the HIV virus;
- Fear that the loss of the current generation of HIV advocates and activists has left younger replacements insufficiently trained and prepared to pick up the mantle when they have retired or passed away.
Some patient advocacy organizations, such as HealthHIV, ACT UP Philly, and AIDS Alabama, offered additional historical perspectives from the last ADAP Crisis. It was noted that the Positive Women's Network (PWN) was in its infancy during the last go-around, but today it stands in a much stronger position to help shape the public debate.
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| Photo Source: ADAP Advocacy |
[Scott Bertani, right, Brandon M. Macsata, center, Marcus J. Hopkins, left]
ADAP Advocacy shared details about the re-activation of its grassroots advocacy campaign, "ADAP Saves Lives: End the Wait," including the airing of its new digital public service announcement (PSA). The latest PSA builds on the landmark PSA – which aired on 210 media outlets from February 21, 2011 to April 3, 2011.
The newly released PSA features Texas-based HIV-positive advocate Michelle Anderson, who was among the advocates included in the 2011 PSA. It can be viewed online here: https://www.youtube.com/watch?v=jxt-RuYqWE8.
Additionally, ADAP Advocacy announced the launch of its new grassroots advocacy hub, available online here: https://www.adapadvocacy.org/adap-saves-lives. Presently, it showcases the two states with waiting lists, Iowa and Utah, as well as four other states being monitored by the organization. Those states include Florida, Illinois, Pennsylvania, and Texas. The grassroots advocacy hub will add more resources and tools to help patient advocates in those states, and the broader advocacy campaign is also building out state advocacy teams.
For advocates in Pennsylvania, representatives from ACT UP Philly and PWN Pennsylvania shared updates on their work, and much of the conversation focused on improving coordination among the groups. ADAP Advocacy pushed the narrative that all the bubbling fear among PLWHA needed to be channeled into advocacy, as it was during the previous ADAP Crisis.
Not all sentiments were fearful, however. One of the comments most frequently made by attendees was how surprised they were that ADAP Advocacy chose to bring a Fireside Chat event to Pittsburgh:
"So often, we have to travel elsewhere to attend these meetings. Everyone goes to Philadelphia, which might as well be another planet compared to the rest of Pennsylvania. We need more of these kinds of meetings in Pittsburgh."
And this is the clarion call for advocacy organizations:
So often, we focus on hosting events in large cities—New York, San Francisco, Atlanta, Chicago, Boston, Washington, DC—because they are easier and more convenient to reach by transportation.
This tendency reflects arguably the greatest disparity in public health:
So often, we focus on hosting events in large cities—New York, San Francisco, Atlanta, Chicago, Boston, Washington, DC—because they are easier and more convenient to reach by transportation.
This tendency reflects arguably the greatest disparity in public health:
The worst health outcomes in the U.S. rarely occur in our nation's major cities; instead, they lie in smaller cities, rural areas, and geographically isolated regions.
While we regularly speak of rural hospital closures and a lack of access to quality healthcare services in underserved areas, we rarely host meetings and conferences there. This inevitably excludes the patient voices we most need to hear, as they cannot afford to travel to those major cities without significant financial and time outlays. It's food for thought, as organizations plan these events.
Additional Health Fireside Chats are planned for 2026.
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.
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