HIV ADVOCATES KICK OFF USCHA WEEKEND IN ANAHEIM WITH EMOTIONAL MOCK FUNERAL AND CELEBRATION OF LIFE, AS THREE FEDERAL THREATS CONVERGE ON HIV RESEARCH
Save HIV Funding action honored lives lost and people living with HIV, underscoring the human stakes of threats to HIV prevention, treatment, care, and research.
ANAHEIM, CALIFORNIA – FRIDAY, SEPTEMBER 18, 2026 – HIV advocates kicked off U.S. Conference on HIV/AIDS (USCHA) weekend in Anaheim yesterday with an emotional mock funeral and Celebration of Life organized by the Save HIV Funding (SHF) campaign. The action honored people living with HIV, remembered lives lost, and warned of preventable losses if the systems supporting HIV prevention, treatment, care, and research are weakened.
Speakers included: Kamaria Laffrey (SERO Project), Vince Crisostomo (SFAF), Jerry Cuffey, Barb Cardell (PWN-USA), Malcolm Reid (PLHIV Caucus), Maxx Boykin (SHF Campaign Manager), and Jeremiah Johnson (SHF co-founder).
The Anaheim action carried forward SHF’s DC funeral protest and Celebration of Life, which used memorial imagery and living-obituary readings to make the consequences of funding instability visible. Laffrey’s living obituary inspired the original Washington, D.C., action and this continuing effort.
As advocates, healthcare providers, researchers, and people living with HIV convene for NMAC’s USCHA conference at the Hilton Anaheim, SHF is calling attention to three simultaneous threats to HIV research: overdue funding notices, a proposed reorganization of federal offices supporting clinical research, and an interagency agreement enabling NIH funds to move to Defense for designated research activities.
For interviews and additional reporting resources, contact tony@morrisonmediaco.com.
SHF continues to call on Congress and the Trump Administration to protect the full chain of HIV research: the funding that keeps studies operating, the experienced staff who support safe trials, and the resources needed to deliver better prevention and treatment. An interruption would disrupt healthcare far beyond HIV—breaking apart research teams and weakening the clinical networks, laboratories, and community partnerships that have helped underpin emergency responses in the United States and around the world.
The following reporter resource guide provides background, primary sources, and questions for officials on the three developments affecting HIV research.
VIDEO courtesy Mark S. King and editor
PRESS RESOURCE GUIDE: THREE THREATS, ONE RESEARCH SYSTEM
1. NIH–DEFENSE AGREEMENT: WILL HIV RESEARCH RESOURCES BE TRANSFERRED TO D.O.D.?
What is happening: House Appropriations Committee Ranking Member Rosa DeLauro warned on September 3 that an interagency agreement could give Defense access to billions of dollars appropriated to NIH, including NIAID. Her statement called for a full accounting of the arrangement and potential transfers.
The published agreement establishes a mechanism for NIH to fund Defense acquisition work for medical countermeasures, including therapeutics, diagnostics, and protective equipment. It requires separate funding orders and says the agreement itself does not obligate funds. It also sets out legal-compliance requirements and NIH oversight responsibilities.
What that means: An agreement and the movement of money are different developments. The public document establishes a route for transfers; it does not establish that billions have already been transferred or identify a verified dollar loss to HIV research.
Why it matters: SHF’s concern is whether resources intended to sustain biomedical research could be redirected while HIV programs are waiting for renewal decisions. The central question is what work would lose support, if any, as the agreement is implemented. Stated controls need to be matched by transparent decisions about projects, amounts, and effects on existing research.
What SHF is asking: Congress should demand the project-by-project accounting, identify any NIAID grants or programs that would lose resources, ensure funds serve their congressionally appropriated biomedical research purposes, and include protections for HIV research in the final fiscal year 2027 spending bill.
Questions for NIH, HHS, and Defense: What orders have been approved? How much funding is committed or transferred? Which accounts supply it? Will any HIV awards, staff, or studies lose support? How will Congress and the public track these decisions?
Primary sources: Published NIH–Defense interagency agreement; House Appropriations Democrats’ statement. The materials reviewed do not verify the scale of any completed transfer or any direct loss to HIV research.
2. DELAYED FUNDING NOTICES: THE NEXT ROUND OF HIV RESEARCH SUPPORT HAS BEEN STALLED
What is happening: SHF’s research briefing reports that NIAID notices of funding opportunity, or NOFOs, for HIV clinical trial networks and Centers for AIDS Research were months overdue. An anticipated August 25 release date passed without publication, according to the briefing’s September 9 update.
What that means: A funding notice is the formal announcement telling researchers what support is available, who can apply, and how applications will be evaluated. It starts a time-consuming process. Delaying that starting point can squeeze the application, review, and award schedule even when Congress has provided money for research.
For the programs identified in SHF’s briefing, the concern is continuity into the next funding period. An overdue notice is not, by itself, proof that every existing grant has ended or that all trials have stopped. The urgent questions are when current awards expire, whether temporary support will cover any gap, and how participants will be protected if funding is interrupted in addition to if the HIV research workforce and infrastructure will be sustained..
Who is affected: SHF is concerned about four clinical trial networks and 19 Centers for AIDS Research (CFARs). Networks coordinate studies across research sites; CFARs support shared scientific resources and collaborations. They are related parts of the research system, with different roles.
- ACTG: Adult HIV treatment and related research, including efforts to improve treatment and pursue a cure.
- IMPAACT: Research involving infants, children, adolescents, and pregnant people—groups whose treatment and prevention needs require dedicated study.
- HPTN: Studies testing approaches to prevent HIV acquisition.
- HVTN: HIV vaccine and immune-response research.
- CFARs: Research centers that provide shared expertise, facilities, and support for investigators and community partnerships.
Why it matters: Trials depend on sustained relationships with volunteers, trained coordinators, laboratories, clinical teams, and researchers. If a site loses staff or cannot continue a study, restarting requires more than restoring a budget line. Researchers may lose follow-up information, participants may be removed from trials before studies are completed, and communities may lose trust in institutions that promised continuity.
What SHF is asking: Congress should demand that HHS approve the overdue CTN and CFAR NOFOs for the ACTG, IMPAACT, HPTN, HVTN, and the CFARs immediately and direct NIH/NIAID to release the approved CTN and CFAR NOFOs to the public without further delay and demand a clear plan to prevent funding gaps and protect study participants.
Questions for HHS and NIH: When will HHS approve the CTN and CFAR NOFOs? What is the NIH doing to ensure that HHS will approve the NOFOs before funding runs out? What steps is the NIH/NIAID taking to ensure that the NOFOs will be released as soon as possible after HHS approval?
3. PROPOSED REORGANIZATION: WHO WILL KEEP RESEARCH OPERATING SAFELY?
What is happening: A federal notice proposes abolishing NIAID’s Division of Clinical Research (DCR) and several offices, then redistributing clinical operations and oversight among other NIAID components. NIH published its reorganization plan on September 9, 2026. It is holding public comment open only briefly from September 9–18, 2026. This timeline is inordinately and extraordinarily short.
What that means: A reorganization can move duties between offices.The practical test is whether the people, expertise, and accountability needed to perform those duties move with them—and whether researchers know whom to contact throughout the transition.
A central concern for SHF is the regulatory and statistical support for HIV clinical trials.
Why it matters now: SHF warns that changing oversight arrangements while funding renewals are delayed could create overlapping uncertainty. A trial needs both financial support and functioning administrative and scientific support. Unclear responsibility during a transition could make it harder to resolve problems quickly. Reorganizations normally can take six months or more to complete. It would be important and prudent to delay any NIAID reorganization until the CTN and CFAR NOFOs are released to the public and the renewal process is complete, to avoid damaging, unknown, or unforeseen impacts that a NIAID reorganization might have on CTN and CFAR funding.
The federal notice describes realigning oversight, not eliminating every oversight function. SHF is asking the administration to show how it will protect capacity and continuity before any changes take effect.
What SHF is asking: Congress should press HHS to oppose or delay the reorganization pending meaningful input from scientists, experienced staff, and affected communities; require that a transition not delay the overdue funding notices; and include protections in the final fiscal year 2027 spending bill against reductions in HIV clinical trial and research capacity.
Questions for HHS and NIH/NIAID: Which office will assume each function? How many experienced staff will remain? Who will be accountable during the handoff? What is the implementation schedule? How will active studies and funding renewals be protected? Is there any area of clinical research at NIAID that may be stopped? Why is there such a rush to reorganization with so little time for public comment?
Primary source and comment information: Federal Register reorganization notice. The notice provides NIAIDExecutiveServices@mail.nih.gov for comments. It's stated comment window overlaps with the opening days of USCHA.
WHAT IS AT STAKE FOR PATIENTS, COMMUNITIES, AND THE COUNTRY
The three issues affect different parts of the same system. Delayed notices threaten predictable funding. Reorganization raises questions about continuity of oversight. Transfers could change the resources available. SHF warns that their combined effect could be more damaging than any one action considered alone.
For volunteers, disruption could mean uncertainty about study visits, medications, monitoring, and the transition to other services. For communities, it could mean losing trusted staff and research sites built through years of engagement. Any interruption should come with a funded plan to protect participants and preserve access to appropriate care.
For science, SHF warns of setbacks to pediatric treatment, HIV cure research, and further work on long-acting prevention, including lenacapavir. The concern is the continuing research pipeline; it should not be read as a claim that an already approved medicine has been withdrawn.
SHF also warns that harm could extend to work on tuberculosis, viral hepatitis, cancer, and preparedness for future outbreaks, noting that HIV research infrastructure supported the COVID-19 response. SHF argues that weakening that capacity would sacrifice expertise the country may need again.
These are risks demanding answers now. The materials reviewed do not establish that all affected trials have closed, that participants have already lost treatment, or a quantified increase in infections or drug resistance attributable to these three developments.
MEDIA ACCESS AND REPORTING RESOURCES
Kamaria Laffrey spoke at the Anaheim action. Interview requests about the living-obituary inspiration and the human stakes of funding decisions may be directed to the press contact below. Journalists may also request connections to SHF policy specialists, researchers, providers, and people living with HIV through the press contact below; individual availability will be coordinated.
For post-event coverage and interview coordination, contact the press representative listed below. Additional reporting resources: SHF state-by-state resources; SHF’s Washington funeral protest recap; NMAC’s official USCHA information.
HIV FUNDING FAST FACTS
To support reporters covering the urgent policy landscape, the campaign is releasing the following Fact Sheet outlining the impact, scale, and human stakes of ongoing funding threats:
- Global HIV/AIDS Funding Under Attack: Advocates successfully turned back $400M in proposed cuts to PEPFAR as part of a larger attack on international assistance programs in the recissions bill passed by Congress in July 2025. Despite this success, changes implemented unilaterally by the Administration have severely compromised the program, including the elimination of HIV prevention funding for several key populations and replacing existing transparent and highly effective country and regional operations planning with clandestine bilateral contractual negotiations that undermine lifesaving implementation strategies for people living with HIV and seek to extract trade, data, and other unrelated concessions from member countries.
- AIDS Drug Assistance Programs in Crisis: After years of flat federal funding in the midst of rapidly increasing healthcare costs, 15 state ADAP programs recently reported deficits in the current fiscal year, and 2 ADAPs reported active waiting lists – threatening medication access for thousands of Americans.
- Federal HIV programs have more than 35 years of bipartisan support: In 2003, President George W. Bush created PEPFAR (the President’s Emergency Plan for AIDS Relief), which has saved 25 million lives worldwide. Domestically, Bush signed reauthorizations of the Ryan White CARE Act, expanding federal support for HIV care. Protecting HIV funding has historically been a bipartisan commitment to public health and stability.
- Federal HIV programs are cost-effective: Every $1 invested in HIV prevention saves the health care system $3 to $7 in future treatment costs. Cuts would increase long-term spending.
- Medicaid is the largest source of coverage for people with HIV in the U.S., covering roughly 40% of people living with HIV. Medicaid expansion has been associated with a 33% increase in PrEP prescriptions. Cuts to HIV funding would have ripple effects across the entire Medicaid system, limiting access to care for millions of low-income Americans.
- HIV care is part of the U.S. health care system: Federal HIV funding supports access to preventive care, primary care, mental health services, housing, and medications. Cutting these funds would destabilize programs millions of Americans depend on — including those living with chronic conditions, low-income families, and uninsured people.
- Over 1.2 million Americans are living with HIV, and over 500,000 rely on federal programs like the Ryan White HIV/AIDS Program for lifesaving medication and care.
- HIV prevention funding protects everyone: The federal government funds access to PrEP (pre-exposure prophylaxis), a daily medication that reduces the risk of HIV by 99%. Rolling back funding would increase new HIV cases and long-term costs to the health care system.
- HIV funding is about more than one disease: These programs create a blueprint for coordinated, federally funded responses to health crises — from the opioid epidemic to COVID-19. Gutting HIV funding would weaken America’s preparedness for future public health threats.
- HIV funding protects vulnerable communities: Black and Latine communities account for more than 65% of new HIV diagnoses. Protecting these funds protects racial and health equity.
Additional State-by-State Resources & Fact Sheets
PHOTOGRAPHY BY RIKO BOONE:
About the Save HIV Funding Campaign:
Launched in 2023 by PrEP4All, AVAC, and the HIV Medicine Association in partnership with the Federal AIDS Policy Partnership, the Save HIV Funding Campaign is a national coalition supported by more than 150 organizations representing advocates, healthcare providers, researchers, and community leaders. The campaign was formed in response to proposed Congressional cuts to federal HIV programs and has since helped avert more than $3.5 billion in domestic HIV funding cuts. Through coordinated advocacy, media engagement, and community mobilization, Save HIV Funding works to place the future of HIV prevention and care squarely in the national conversation. The campaign convenes community health providers and advocates across the country, organizes bipartisan congressional engagement, and mobilizes public voices to ensure that lifesaving HIV programs remain strong, accessible, and fully funded for the communities that rely on them.
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