'ADAP Saves Lives: End the Wait' National Advocacy Campaign Moves Into Full Gear

By: Michelle Anderson, MA, Grassroots Advocacy & Patient Storytelling Consultant, ADAP Advocacy

For people living with HIV, access to medication is personal…deeply personal. It means staying healthy, caring for family, working, and planning for the future. When access is threatened, discussion of program funding becomes a much more immediate question: Will my next prescription be available when I need it?

The AIDS Drug Assistance Program (ADAP) exists to help eligible people living with HIV/AIDS access treatment they otherwise could not afford. For those of us who depend on this assistance, or previously relied on it, qualifying should provide some reassurance. The return of ADAP waiting lists has brought back a fear that many longtime advocates remember. Qualifying for assistance does not bring peace of mind when the assistance itself is out of reach.

Source: NASTAD

After 13 years, people living with HIV/AIDS in two states are once again being denied access to care and treatment because ADAP is running out of money. According to the National Alliance of State and Territorial AIDS Directors’ ADAP Watch, Iowa and Utah have ADAP waiting lists.

These experiences are why patient voices must remain central to the response. People living with HIV understand what consistent treatment makes possible. Their knowledge can help lawmakers understand the consequences of funding decisions and recognize the need to act before people lose access to care.

A Renewed Campaign Built on Years of Advocacy

ADAP Advocacy’s 'ADAP Saves Lives: End the Wait' national advocacy campaign is moving full gear again. Created in 2009 in response to 99 clients on ADAP waiting lists, the campaign reactivated in June 2026. Its message remains unchanged: no one should be told to wait for lifesaving medication.

Over the last several months, much of the campaign’s work has happened behind the scenes. ADAP advocacy has been rebuilding grassroots networks across six key states while simultaneously reconnecting with advocates and strengthening the relationships needed to move people into action. That work takes conversations, follow-up, and trust. It also means making sure people living with HIV/AIDS help shape the response. It also means ADAP Advocacy offering help to advocates in these states, rather than trying to march in and dictate strategy.

Source: ADAP Advocacy

The 'End the Wait' campaign has also created opportunities for communities to come together and speak up. Pennsylvania is one of the six key states where the campaign is focused on protecting ADAP access as funding shortfalls force eligibility and drug formulary restrictions that threaten care. These cost containment strategies are the invisible waiting lists in this struggle. In Pittsburgh, ADAP Advocacy held a Community Town Hall Meeting and a subsequent Health Fireside Chat focused on these challenges and their impact on people who depend on ADAP. The campaign’s newest public service announcement brought those conversations to a wider audience with a clear message: access to lifesaving HIV medication must be protected. These efforts are helping turn public awareness into support for action.

Connecting Information with Action

As the 'End the Wait' campaign expands, a newly announced interactive AIDS Drug Assistance Program Grassroots Advocacy Hub gives advocates a central place to find information and coordinate their efforts. It brings state-focused updates and campaign materials together so patients and community partners can better understand the issues and share them with others. Resources include advocacy and social media toolkits, communication and calendar-sharing tools, and other resources that organizations and individuals can use with their networks. Having these materials in one place makes it easier to bring accurate information into community conversations and keep attention on the need for reliable access to treatment.

The AIDS Drug Assistance Program Grassroots Advocacy Hub features resource centers for Florida, Illinois, Iowa, Pennsylvania, Texas, and Utah, at least to start, helping advocates take the next step. The Congress lookup identifies Members of Congress, so people know which offices to contact, while the global calendar highlights upcoming events and opportunities to participate. These features connect learning about an issue with practical ways to act. The hub is available online at https://www.adapadvocacy.org/adap-saves-lives.

Building A Collective Demand for Treatment Access

ADAP Advocacy’s 'ADAP Saves Lives: End the Wait' national advocacy campaign focuses on convincing Congress to fully fund the AIDS Drug Assistance Program. To that end, a national sign-on letter calling for an additional $175 million is now being circulated for signatures!

Source: liveabout dot com

Protecting access to HIV treatment takes support from across the community. Housing providers, food assistance programs, mental health organizations, reproductive health advocates, disability rights groups, and faith communities serve many of the same people. By adding their names to the national letter, these organizations can join a collective call to protect ADAP’s across the country.

The letter, in part, reads:

"We are concerned that federal investment hasn’t kept pace with the program's changing fiscal demands. Even as more clients enroll and healthcare costs climb, federal funding for ADAPs has remained essentially flat since 2014. In inflation-adjusted terms, that erosion has reduced the federal investment's purchasing power to roughly the level it had in 1999. As a result, states are resorting to lowering income limits, restricting access to antiretroviral treatment options, and removing access to medications used to treat comorbid conditions, including diabetes, cardiovascular disease, and chronic kidney disease."

Click here to read the full letter.

Click this link to add an organization to the national sign-on letter. Signatures are limited to organizations, not individuals. Organizational signatories are being added on a rolling basis.

Individuals can use the patient resource center’s advocacy widget to contact their legislators and urge them to fully fund ADAP.

Bringing the Conversation to Texas

The campaign’s organizing efforts will continue with a virtual statewide Texas Community Town Hall Meeting on Wednesday, November 18, 2026, from 7:00 pm to 8:00 pm CENTRAL TIME. The meeting is open to the public and will focus on access-to-care and treatment challenges involving the Texas HIV Medication Program, the state’s ADAP.

Patients, providers, community organizations, families, and allies across Texas are encouraged to participate. Their experiences can help identify barriers, inform advocacy, and keep the needs of people living with HIV at the center of the discussion.

Source: ADAP Advocacy

Visit ADAP Advocacy's Events page to register: https://www.adapadvocacy.org/events/2026/townhall/texas.

Conclusion

The 'ADAP Saves Lives: End the Wait' national advocacy campaign, centered around patients and their lived experiences with ADAP, ensures that the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion. HIV advocates have faced this uncertainty before, and they’ve always risen to the challenge. That is what needs to happen now! ADAP Advocacy is doing its part by building state grassroots efforts, making user-friendly advocacy resources and tools available, hosting community town hall meetings, spearheading an organizational national sign-on letter, and complementing the work already being done at the state and community levels.

ADAP SAVES LIVES… END THE WAIT!

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.

Fireside Chat Retreat in Pittsburgh, PA Tackles Emerging Crisis Facing AIDS Drug Assistance Programs

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.

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

ADAP Advocacy is pleased to share the following brief recap of the Health Fireside Chat:

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.

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."

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.

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:

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.

Reflections from an HIV Advocate's Journey: LaDonna Boyens

By: LaDonna Boyens, Super Advocate

I am a super advocate, because if advocacy is speaking from one's truth, then my advocacy journey has and will be ongoing. Even at 52 years old, I experience growing pains. In my HIV advocacy journey there is so much to be done to help PLWHA and there are only so many hours in a day, in a week, etc., but if we are honest with ourselves, we live it as long as we live. I could give you facts as a testimony and give you lots of statistics, but truth be told I want you to learn with me. Advocacy is my life, to stand up for what I truly believe is right and fair, and be a voice for the voiceless.

My mom use to tell me I have a big mouth and my family is so proud that I am using my power for good and not evil (hence the "super advocate" statement). It truly is a calling that you need to walk and accept it with HIV-related STIGMA holding so people back, I just want you to know not to let a diagnosis keep you down or to live in a broken state-of-mind.  I am here waiting to embrace you, as are so many others. I am HIV positive and to tell the truth, I am different, but for me I love being different and making a difference.

Over the years, my advocacy journey has allowed me to work with Philadelphia FIGHT to help connect others to community resources. I have been involved with the Positive Women's Network (PWN), because women need a collective voice in our fight against the epidemic. And I've attended several national conferences hosted by the ADAP Advocacy Association in Washington, DC. Each experience has opened me to new colleagues, and new advocacy tools.

There has been so many leaders and soldiers that aren't with us in the physical anymore so I truly let those that are still here know how important they are to me and others. Sometimes personality gets in the way of the work including mine, but I remind myself, it is bigger than my hurt feelings or my bruised ego and continue to let people know we are HIV/AIDS diagnosed we count, we matter, and we are still here. The fight still remains so I want to encourage you to remain. Don't quit, hang in there when you get weary of doing good, do a little more, roll up your sleeves and go at it again and I will be there with you.  We are not victims! We are victorious!  If you can be anything please be kind! As advocates we will be the change makers of tomorrow. So my request is that you invest in us today.




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..