2025: A Look Back on Our Advocacy

By: Brandon M. Macsata, CEO, ADAP Advocacy

ADAP Advocacy inches toward the conclusion of an active year in advocacy, one defined by chaos, perseverance, and targeted success. At the outset of 2025, we issued a call to serve for grassroots patient advocates. The MAGA movement's return to power set the stage for upheaval. Still, very few advocates could have predicted the scope of the damage being done to the nation's public health system, ranging from vaccine skeptics driving misinformation into the mainstream to dangerous price control schemes, or draconian cuts to both prevention and treatment services for people living with HIV/AIDS. ADAP Advocacy was among the first national advocacy organizations to warn that cuts were coming to popular programs, like the Ryan White HIV/AIDS Program, despite the widely accepted belief these programs were "safe" from ideological attacks.

Our contribution to fighting the Trump Administration's dangerous policies was to re-engage our grassroots network, which had last been deployed during the ADAP Crisis in 2008-2012. It's older now, with even more ailments, but still vibrant and committed enough to deliver effective patient advocacy. At no time was it more necessary than when the bombshell hit that HIV prevention funding was being gutted at the Centers for Disease Control & Prevention. When these critical HIV prevention programs faced elimination, ADAP Advocacy, like so many other organizations, stepped up and warned lawmakers about the negative repercussions. These cuts were only exacerbated by the One Big Beautiful Bill Act (OBBBA) and its steep cuts to Medicaid, which our grassroots efforts also opposed. Whereas far too many funding cuts have occurred this year, they have also sparked a renewed call for patient advocates to be more vocal about the policy decisions that could affect them.

There is no greater example of the need for patient advocates to engage than the 340B Drug Pricing Program. In 2025, ADAP Advocacy launched its 'Too Big To Fail?' national advocacy campaign, comprised of blogs, television commercials, fact sheets, policy papers, and op-eds. Our commercial calling out hospitals for aggressive debt collection garnered over half a million views on YouTube, alone. Our op-ed in POZ Magazine, "Why the 340B Rebate Model Puts Patients Before Profits", added the patient perspective to this important policy debate.

Photo Source: POZ Magazine

As long-overdue reforms to the program appear within reach, primarily designed to improve access to care and treatment through better accountability and transparency, special interest groups are turning up the heat. These paternalistic ableist voices are a growing threat to silence patient advocates. Provider groups with executives making hundreds of thousands of dollars in compensation packages, and in some cases, exceeding $1 million, telling patients who cannot afford their copayments what is "best" for them is something even the best Hollywood screenwriter couldn't dream up. Starting this year, we're calling a spade a spade when it comes to this behavior.

One key area of success was on long-acting injectables. Despite more state AIDS Drug Assistance Programs (ADAP) following in the footsteps of their state Medicaid programs and covering Cabenuva on their drug formularies, there remain some holdouts. Until 2025, Texas's HIV Medication Program (THMP) had refused to offer Cabenuva...that is, until Texas advocates mobilized and relentlessly pushed for change. ADAP Advocacy, to the extent it was asked to help, chimed in on several occasions. But it was the local voice that brought about real change for people living with HIV/AIDS in their state. We've long embraced the need for national organizations to lead on federal policy, leaving state and local policy debates to the folks who call them home. National groups "meddling" in state policy affairs are rarely successful.

Photo Source: Prism Health North Texas

Our collaborative work was highlighted with the Partnership for Safe Medicines, combating counterfeit drugs, with PlusInc, about the patient perspective on prior authorization, with the Global Coalition on Aging, safeguarding innovation and access for older adults, or spearheading 37 organizations seeking an HIV carveout from the harmful impacts of the Inflation Reduction Act. We hosted key stakeholders for Health Fireside Chats in Minneapolis, Minnesota, and Atlanta, Georgia. Our three patient advisory committees engaged throughout the year to ensure that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion.

As ADAP Advocacy enters 2026, patient-centered advocacy resources and tools will become even more critical, and our organization is eagerly preparing to deliver some new ideas. A look back at our advocacy has to focus on the future, mainly by improving access and addressing affordability. 

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.