'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.

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

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

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

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

Photo Source: NASTAD

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

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

The reality is that ADAP programs quite literally save lives.

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

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

Photo Source: Rolling Stone

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elimination of the Housing Opportunities for Persons With HIV/AIDS (HOPWA) program, referring to the program as “…outdated by focusing on housing low-income, homeless, and at-risk HIV-positive individuals, as the prognosis and medical care for HIV have significantly improved since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

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

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

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

Photo Source: ADAP Advocacy

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

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

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

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

References:

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

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

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

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

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

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

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

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

Three Red States Expand Medicaid – What That Means for ADAP

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

The 2018 midterm election was remarkable in several ways: over 47% of registered voters participated in this election – the highest turnout since 1966 which saw 49% (Domonoske, 2018); the Democratic Party regained control of the House for the first time since 2011; a record number of women won seats in the House (Watkins, 2018); two women became the first Native American women elected to Congress (Watkins); two other women became the first Muslim women elected to Congress (Watkins); Jared Polis became the first openly gay man to be elected governor of a state in Colorado. But something else historic happened, as well – Idaho, Nebraska, and Utah joined Maine in begin the only states to expand Medicaid under the Affordable Care Act (ACA) via a ballot initiative (Pramuk, 2018). And these states are pretty deeply Red.

Photo Source: Political Dig

For those unfamiliar with Maine’s Medicaid debacle, here is a quick rundown: Maine votes adopted a Medicaid expansion via a ballot initiative in November 2017 which required the submission of a state plan amendment within 90 days and implementation within 180 of the measure’s effective date (which would have been April 03, 2018). Maine’s famously cantankerous and curmudgeonly outgoing Governor Paul LePage (see pictured above) – who vehemently opposed expanding Medicaid – failed to meet that deadline, illegally ignoring the will of the voters – he famously stated he would go to jail before allowing Maine to expand Medicaid (Miller, 2018), and took the issue to court where he has been repeatedly smacked down by judges who insist that he comply with the law and implement the expansion. Governor-Elect Janet Mills – who campaigned on following the law and authorizing the Medicaid expansion and was elected in the 2018 midterm elections – appeared in court on Wednesday, November 07, to listen to arguments in an advocacy group’s case against the Maine Department of Health and Human Services (Bleiberg, 2018).

What is troublesome about the myriad refusals of LePage to abide by the law is that it may have just been a prelude to how Republican governors in these Conservative states may attempt to thwart the will of the voters in Idaho, Nebraska, and Utah. To be fair, two of these governors has in some capacity stated they will abide by the will of the voters: Governor-Elect Brad Little (Idaho) has stated that he will implement the initiative (Guilhem, 2018); Governor Pete Ricketts – just elected for a second term – though a vocal opponent of the measure, has previously stated that if expansion made it onto the ballot, it would be up to the voters (Quinn, 2018). Governor Gary Herbert of Utah vocally opposed Utah Proposition 3, which not only orders the expansion of Medicaid, but implements a prohibition against any changes that would reduce coverage, benefits, or payment rates below policies in place on January 01, 2017.

While these responses are not full-throated endorsements of expansion, they are likely the best we can expect from members of a political party that has vehemently opposed the expansion of Medicaid at almost every turn. The problem with their opposition, however, is that Medicaid expansion – and, in fact, Universal Healthcare in general – are highly popular; even amongst Republican voters, support for Universal/Single-Payer/Medicare-For-All healthcare provided by the government is growing steadily as healthcare costs continue to rise well above the rates of inflation and wage growth.

So, what does Medicaid Expansion mean for the AIDS Drug Assistance Program? Well, a few things:

What we have seen in states that implemented Medicaid Expansion under the ACA is that a significant percentage of ADAP/Ryan White recipients have been shifted off of the Ryan White Program and over to Medicaid. This has had various impacts, both positive and negative, for those who have traditionally relied upon Ryan White and ADAP for payment and coverage of the HIV treatment and medications. Depending upon the way the patient’s state implements Medicaid, they may now be required to pay premiums, deductibles, and/or co-pays for doctor visits and medications that were previously covered by Ryan White and ADAP. That said, Ryan White funds canbe used to cover those costs (HIV/AIDS Bureau, 2014).

Patients living in states that have not expanded Medicaid often have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage, even if they meet the income threshold. Additionally, certain states may also require that patients’ Viral Load or CD4 T-Cell numbers meet a specific threshold, as well, meaning that, if a patient’s Viral Load falls below or CD4 T-Cell count rises above the designated threshold for approval, they may lose their eligibility for coverage. This was my case in West Virginia before the state expanded Medicaid. Expanding Medicaid means that people living with HIV no longer have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage (so long as their income is below the threshold).

The shifting of these patients off of Ryan White ADAP budgets has resulted in lower expenditures on drugs and other HIV treatment costs, which allowed the Ryan White Program to begin providing payment for private health insurance for all Ryan White clients using Ryan White funds through insurance assistance. Only three states do not provide this service – Texas, Idaho, and Mississippi. With the expansion of Medicaid in Idaho, this may allow the program the resources to begin doing so.

In order to shift clients off of Ryan White and onto Medicaid, a client’s income must fall within the specified percentage of the Federal Poverty Level (FPL) respective to each state’s guidelines. In most expansion states, that threshold is 138% of the FPL ($16,753.20 per year for an individual). This percentage for eligibility for Ryan White ranges from 200% (Idaho, Iowa, and Texas) to 550% (South Carolina), which is much more forgiving than the Medicaid requirements.

An additional issue can arise with patients who have been shifted onto Medicaid, as well. While the Ryan White Program was designed solely to focus on the needs of people living with HIV, Medicaid – which is the largest payor for HIV services in the United States – was not designed specifically with the needs of HIV patients in mind. There may be something of a barrier to care and treatment that exists when patients who are used to dealing with Ryan White staff who are familiar with the social, psychological, and medical needs of HIV patients are suddenly expected to communication with Medicaid employees who may not be sensitive to or accommodating of the unique needs of people living with HIV. While it may seem small, that simple communication barrier can lead to lower adherence to medication regimens, missed appointments, and falling out of the continuum of care. The National Alliance of State and Territorial AIDS Directors (NASTAD) holds numerous Technical Assistance conferences and meetings throughout each year where Medicaid directors and staff can attend various workshops and plenary sessions that teach them better ways to approach people living with HIV and to increase cultural competence when dealing with this population.

In general, Medicaid expansion has been a boon for the Ryan White and ADAP Programs. Hopefully, the transition to expanded Medicaid coverage in Idaho, Nebraska, and Utah will be smooth, and people living with HIV will gain access to more options to treat their disease and lead happier, healthier lives.

References:

• Bleiberg, J. (2018, November 07). Day after election, Mills makes her presence felt at court hearing on Medicaid expansion. Bangor, ME: Bangor Daily News: Politics. Retrieved from: https://bangordailynews.com/2018/11/07/politics/day-after-election-mills-makes-her-presence-felt-at-court-hearing-on-medicaid-expansion/
• Domonoske, C. (2018, November 08). A Boatload Of Ballots: Midterm Voter Turnout Hit 50-Year High. Washington, DC: National Public Radio: Elections. Retrieved from: https://www.npr.org/2018/11/08/665197690/a-boatload-of-ballots-midterm-voter-turnout-hit-50-year-high
• Guilhem, M. (2018, September 26). Brad Little, Idaho's GOP Gubernatorial Candidate, Will Support Medicaid Expansion – If It Passes. Boise, ID: Boise State Public Radio. Retrieved from: http://www.boisestatepublicradio.org/post/brad-little-idahos-gop-gubernatorial-candidate-will-support-medicaid-expansion-if-it-passes#stream/0
• HIV/AIDS Bureau. (2014, June 06). Clarifications Regarding Use of Ryan White HIV/AIDS Program Funds for Premium and CostSharing Assistance for Medicaid. Rockville, MD: HIV/AIDS Bureau: Health Resources and Services Administration. Retrieved from: https://hab.hrsa.gov/sites/default/files/hab/Global/pcn1306medicaidpremiumcostsharing.pdf
• Miller, K. (2018, July 12). LePage says he’ll go to jail before he lets Maine expand Medicaid without funding. Portland, ME: The Portland Press Herald. Retrieved from: https://www.pressherald.com/2018/07/12/paul-lepage-says-hed-go-to-jail-before-he-expands-medicaid/
• Pramuk, J. (2018, November 07). Three red states vote to expand Medicaid during an election where health care was the top issue. Englewood Cliffs, NJ: CNBC: Politics. Retrieved from: https://www.cnbc.com/2018/11/07/utah-idaho-and-nebraska-approve-medicaid-expansion-ballot-measures.html?utm_campaign=KHN%3A%20First%20Edition&utm_source=hs_email&utm_medium=email&utm_content=67300319&_hsenc=p2ANqtz-_CWMrFMnVoHCXsdJhMXO7EHWikEaOn0ZFysQJPsMaAA6YjuHvlZp_TKaDDJvAMQg_QQJqAxVB_M3toFbTcXFF0L8RXaQ&_hsmi=67300319
• Quinn, M. (2018, November 07). Red-State Voters Opt for Obamacare. Washington, DC: Governing [dot] com: Topics: Health and Human Services. Retrieved from: http://www.governing.com/topics/health-human-services/gov-medicaid-expansion-voters-ballot-november-states.html
• Watkins, E. (2018, November 07). Women and LGBT candidates make history in 2018 midterms. Atlanta, GA: CNN: Politics. Retrieved from: https://www.cnn.com/2018/11/07/politics/historic-firsts-midterms/index.html

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.