'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.

A Call to Serve: Patient Advocates Must Step-Up During T2

By: Brandon M. Macsata, CEO, ADAP Advocacy

In December 2024, ADAP Advocacy hosted its final Health Fireside Chat of the year as part of a broader Health Policy Retreat held in collaboration with the Community Access National Network. Despite hopes that the country's better angels would be reflected at the ballot box, both organizations had been preparing for what once seemed impossible: Trump Two (T2). POSITIVELY AWARE captured the sentiments shared by members of several national and state-level HIV advocacy and policy organizations from across the country prior to the Election. But now the rubber meets the road...

ADAP Advocacy CEO Brandon M. Macsata on The Morning Meeting, 12/09/24

At the Health Fireside Chat, political commentator Mark Halperin, editor-in-chief of 2WAY Interactive and host of The Morning Meeting podcast, pointedly dished out some straight talk about how patient advocates need to view the election as a call to serve. During the 2024 presidential election, Halperin scooped that President Joe Biden was dropping out of the presidential race days before the news broke, as well as three weeks prior to the election sounding the alarm that the Harris-Walz campaign was in big trouble in the swing states' suburbs. Agreeing to disagree in a few areas, most attendees in the room understood the merits of the advice being given by a political insider.

In fact, Halperin's message echoed the words of the late Bill Arnold (former President & CEO of the Community Access National Network and former founder and board co-chair of the ADAP Advocacy Association): leave your personal politics at the door! Halperin challenged the patient advocates and other stakeholders in the room to fight for a seat at the preverbal table. Ironically, it sounds awfully similar to The Denver Principles and the "Nothing About Us Without Us" principle!

To that end, ADAP Advocacy is returning some of its targeted advocacy efforts back to the very roots of the organization's founding some seventeen years ago...GRASSROOTS, that is. Back in 2010 during the height of the ADAP Crisis that landed over 1,300 people living with HIV/AIDS in thirteen states on waiting lists under the State AIDS Drug Assistance Program (ADAP), including a couple reported deaths, ADAP Advocacy helped to galvanize state grassroots networks to raise awareness and demand action by lawmakers. It is time to re-activate these state grassroots networks to push back against those dark forces seeking to gut the social safety-net, spread misinformation about science and vaccine efficacy, and perpetuate hate and stigma against marginalized communities...many of whom are disproportionately impacted by HIV.

ADAP Advocacy CEO Brandon M. Macsata at Florida town hall in 2010

Patient advocates are encouraged to contact ADAP Advocacy at info@adapadvocacy and indicate which state they're residing in, and how they might help with advocacy efforts. Aside from targeting federal lawmakers with constituent visits to better educate them, there will be plenty of opportunity for patient advocates to influence their state legislatures on many HIV-related issues.

Additionally, ADAP Advocacy leverages patient advocates and other public health stakeholders to serve on numerous patient advisory committees. This is a call to serve!

• ADAP State Drug Formulary Patient Advisory Committee

RE: Drug Formularies

Committee Chair: Rev. Alexander Garbera (Connecticut)

ADAP Advocacy works to improve access to timely, appropriate care and treatment for people living with HIV/AIDS being served by the State AIDS Drug Assistance Programs (ADAPs) under the Ryan White HIV/AIDS Program, including promoting robust drug formularies to best serve the needs of clients. Whenever feasible, ADAP Advocacy strongly supports "open" drug formularies. Approximately 20 seats need to be filled for this committee.

Learn more about the ADAP State Drug Formulary Patient Advisory Committee.

• ADAP Long-Acting Injectables Patient Advisory Committee

RE: Long-Acting Injectables

Committee Chair: Joey Wynn (Florida)

ADAP Advocacy strives to identify best practices on how to improve patient access to long-acting injectable therapies for the treatment of (and prevention of) HIV/AIDS. As general guidelines, they would be designed to help State AIDS Drug Assistance Programs (ADAPs), and other relevant payers, remove the barriers to accessing injectable HIV-related therapies, as well as other non-ARV, health-related injectable therapies. Three seats need to be filled for this committee.

Learn more about the ADAP Long-Acting Injectables Patient Advisory Committee.

• Ryan White Grantee 340B Patient Advisory Committee

RE: 340B Drug Pricing Program

Committee Chair: Guy Anthony

ADAP Advocacy ensures the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion, including on how supports and services are financed under the Ryan White HIV/AIDS Program. To that end, reforming the 340B Drug Pricing Program is of paramount concern by returning the program to its original legislative intent: putting the patient first. Two seats need to be filled for this committee.

Learn more about the Ryan White Grantee 340B Patient Advisory Committee.

ADAP Advocacy has long prided itself on using its Values Statements to define its advocacy work. Among these values, that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion. Patient advocates must step-up during T2, so join the fight!

Photo Source: shutterstock.com