Advocate call for action to save federal funding in looming budget crisis

For months, federal funding for HIV programs has become increasingly uncertain, vulnerable to the current political chaos on Capitol Hill. Already, the deadline for the five-year reauthorization of PEPFAR, the U.S. international HIV program that is credited for saving millions of lives over the last 20 years of its existence, has been missed. The Ending the Epidemic initiative, which aims to reduce the number of HIV diagnoses in the U.S. by 90%, faces possible elimination. With budget and political deadlines approaching in the coming weeks, the only certainty is that no one is sure what’s next.

Organized by PrEP4All, a press conference was held in front of the U.S. Capitol in early September, just before the start of the U.S. Conference on HIV/AIDS (USCHA) warning of “cruel” cuts being proposed to federal HIV and related programs. Among them:

• elimination of the $499 million Housing Opportunities for People with AIDS (HOPWA) program

• 18% cut from the Centers for Disease Control and Prevention (CDC)

• $32 million from the Minority HIV/AIDS Fund

• $220 million from the CDC’s Ending the HIV Epidemics program

• $226 million from the National Center on HIV, Hepatitis, STDs, and Tuberculosis

• $238 million from the Ryan White Care Program

• $3.8 billion from the National Institutes of Health

“Millions of lives are in the balance; we know from our movement that silence equals death. We are here to make noise because there are too many lives on the line,” said Jeremiah Johnson, executive director of in his opening remarks.

Also participating in the press conference were Guillermo Chacon (Latino Commission on AIDS), Malcom Reid (THRIVE-SS), Dafina Ward and Will Ramirez (both with Southern AIDS Coalition, Ronald Johnson, Vinay Saldanha (UNAIDS), Charles King (Housing Works) and political consultant Raniyah Copeland. 

Following up on the press conference, Johnson spoke with POSITIVELY AWARE on November 1, offering his strategic political insights on what could be a catastrophic setback to ending the HIV pandemic.

SB: A few months have passed. What’s happened since regarding the proposed HIV funding cuts?

Johnson: As I think everyone knows, Congress has not been particularly functional in the past couple of months. In many ways where we were at the time of the press conference remains where we are now, where we have two very different competing visions from Congress for the future of HIV funding. We have the House, which has proposed $767 million in cuts to domestic HIV programs, including eliminating the Ending the HIV Epidemic initiative, which is where we’ve been hoping to get some bridge funding for a National PrEP Program until we can get to the broader vision of mandatory funding outlined in President Biden’s last two budget requests. 

On the Senate side, we’d have their Labor HHS bill, where they maintain [the same level of] funding for FY ’24, compared to FY ’23. So, it's flat funded. They did hear some of our advocacy, and gave a $3 million increase to the CDC and specifically talked about national PrEP program. This was a nod to our advocacy. 

Despite the better outcome in the Senate, the situation has advocates very alarmed. We have this Sword of Damocles hanging over our heads as we wait for the appropriations process to finally advance. Right now, we’re watching as the drama unfolds in Congress week after week. We are still waiting for the the House bill to move out of out of subcommittee. We are certainly a long way from seeing the Senate and the House come together to hash out which version moves forward. We’re hoping that our champions in Congress will step in for us and make sure that those cuts don't go through. But there’s also the reality that there’s a strong sentiment among House Republicans to slash government funding, often without regard to how it will affect people. With all that chaos, we don’t know if HIV will continue to stay on our champions’ radar. There’s also very much the danger that there could be a decision to “meet in the middle” between the House and Senate bills which would be devastating to our movement. That would make it much harder to move forward on a National PrEP Program. 

We’re working very closely with AVAC [formerly the AIDS Vaccine Advocacy Coalition], the HIVMA [the HIV Medical Association] and the PrEP in Black America Coalition; and working in coalition with the Federal AIDS Policy Partnership [FAPP] to try and come up with a World AIDS Day awareness campaign utilizing several different types of media, including ad buys, to make it as hard as possible for Congress to ignore HIV. It's a race against time to get ourselves organized to make as big a splash as possible before the appropriations process move forward.

SB: We’re finally seeing positive results of the efforts of getting the awareness of PrEP, what it is and what it does, and then to cut the funding would gut the results of all the expenses and efforts...

Johnson: We have statistics that indicate that we may be getting PrEP to as much as 94% of white individuals who are most in need of PrEP, according to CDC estimates, but only getting it to 13% of Black and African American individuals who are most in need and only 24% of Latinx individuals. The disparities are enormous. This is crushing news for the many people who have been working on PrEP access for so many years. We're in danger of having a situation in which HIV becomes a much rarer health condition within white communities, while it continues to rage within communities of color. I’m not sure how many more chances we have as a movement to rein in those disparities. I see tremendous growth potential in terms of PrEP access, particularly after the past two years of organizing that we've been doing in partnership with diverse stakeholders. For us to simply turn our backs right now is tantamount to saying that we're okay with the epidemic ending for some communities and not for others. That would be particularly cruel at a time when we finally have the tools and the expertise to make significant progress, if we can just get the political will.

We want to carry the message that ending the HIV epidemic—that full, robust funding and a pathway toward a National PrEP Program—is a priority. We want to carry that message to House and Senate appropriators particularly within the the Labor and HHS subcommittee within the Appropriations Committee. We’re looking for any sort of media where political leaders and their staff members are going to directly see that people are talking about HIV as a priority. We also need to get everybody talking to their congressional members—senators in particular, right now. Wherever people are able to let their congressional representatives know, tell them that we have a tremendous possibility here to end HIV as an epidemic—if we don't turn our backs on it right now. People need to see that we're not going to be ignored, and that we're not going to be silent. 

For the press conference [during USCHA], we wanted to elevate the message that we’re seeing HIV funding politicized in a way that we haven't seen before. It’s a real shame because we’ve spent decades really building bipartisan support. We have tremendous champions on both sides of the aisle. And to simply walk away from that, at a time where there are so few things that could be bipartisan, it just would be a shame.

SB: Is there a timeline for action? 

Johnson: We know that the current continuing resolution that is keeping the government open expires on November 17. We know that [House] speaker Mike Johnson [R.-Louisiana] has a proposed schedule for the House Appropriations process, but with all the uncertainty in Congress we can’t be sure of how everything is going to continue from here. We as advocates need to be ready to move at any time right now. Speaker Johnson has talked about another continuing [budget] resolution, and so, we want to make sure that nothing unexpected comes out of that process. But this may be a long, drawn-out process. We need to be prepared in case we need to move quickly. When we talk about a timeline for action—historically, we were able to talk with more certainty about how Congress would behave. Given the events of the past couple of months, no one knows for sure anymore. We just have to be ready.

Johnson and other advocates have undertaken a letter writing campaign, #SaveHIVFunding, enabling people to urge their U.S. representatives and senators to preserve HIV funding. Go to