How the Failure to Reauthorize the U.S.’s AIDS Program Will Affect Nonprofits Fighting HIV

Funders Concerned About AIDS, which represents more than 50 foundations and charities working in the United States and internationally, is arguing that philanthropy needs to play a key role in advocating for congressional renewal of the U.S. President’s Emergency Plan for AIDS Relief, known as PEPFAR. Congress failed to reauthorize the $6.9 billion-a-year program in October.

PEPFAR has been credited with saving 25 million lives across the globe and slashing HIV infection rates in half in some countries. Created under President George W. Bush in 2003, the program has mostly maintained bipartisan support and consistently been extended on five-year cycles. That changed this year when House Republicans declined to reauthorize PEPFAR unless restrictions were added to prevent federal funds from going to organizations that provide abortions. Evidence that PEPFAR funds have directly supported abortions is lacking, according to the Kaiser Family Foundation.

Funders Concerned About AIDS is among PEPFAR supporters that fear Congress’ decision sends an alarming message to countries, nonprofits, and people reliant on the health-care funding. Its October 24 report, “Philanthropic Support to Address HIV and AIDS,” notes that 2023 is a milestone year in the fight against HIV: The 40th year of the first HIV-related private grant, the 40th anniversary of the Denver Principles, which assert the rights of people with HIV and AIDS, and the 20th anniversary of PEPFAR.

The report also documents that philanthropic funding hasn’t shifted significantly since 2015, averaging about $671 million per year, though the number of grant makers giving to combat HIV and AIDS has decreased. About 693 organizations provided funding in 2018, compared with 187 in 2021.

The Chronicle of Philanthropy spoke with Funders Concerned About AIDS’s executive director, Masen Davis, to learn about what the failure to reauthorize PEPFAR means for nonprofits and philanthropy and how grant makers should respond.

This interview has been edited for length and clarity.

If PEPFAR isn’t renewed or is renewed for a short timeline, what could be the implications for nonprofits and institutions fighting against HIV and AIDS?

It’s really hard to overstate the impact that PEPFAR and PEPFAR support has had on communities and groups around the world, especially in Africa, Asia, and Latin America.

The advocacy and the infrastructure that’s been mobilized and sustained during the 40 years of the HIV response has been critical in many parts of the world, including the U.S., and has been instrumental in addressing things like responding to the COVID pandemic and preparing for future pandemics.

Funders Concerned about AIDS

But that infrastructure is incredibly vulnerable and fragile without reliable and sustainable funding. PEPFAR needs a clean reauthorization. We are hopeful that we might see reauthorization by World AIDS Day in December. But without a House speaker and with the current environment in the House of Representatives in particular, that future is really uncertain.

Now, thankfully, because of the way PEPFAR is funded and the way the budget years go, that should not result in financial disruption for most groups for another year or so. The PEPFAR funds can get allocated even without the authorization, but it sends a bad political signal to our friends around the world. It suggests that the U.S. is not stable in its commitment to other nations.

We have about 20 million people living with HIV who are able to access treatment through PEPFAR. Those folks are not going to lose access to treatment and care right away. But they also need to know that these programs will continue. Some of the network members, for example, doing work internationally, have said that they’re seeing a drop in the number of people coming in to get tested or treated because there’s a fear that health care will be taken away from them. We want to make sure that there’s a clear message that the U.S. cares about global health and that we’re going to be there for the long run.

What role can grant makers play in responding to PEPFAR’s possible eradication?

The reality is philanthropy represents 2 percent of overall HIV response financially around the world. There’s a limited role — and yet an absolutely mission critical role — that philanthropy plays. The global response to HIV absolutely requires the scale and reach of government. There’s no way to replace that. But progress can’t be made without philanthropy, and I think it’s especially important in this moment.

At its best, philanthropy can be nimble and innovative and responsive in the ways that government is not. We already know that a lot of the philanthropic response around HIV and AIDS is going into communities, people, and places where governments cannot go or do not go. In the U.S., for example, philanthropy can support things like syringe exchange not covered by government.

In countries where homosexuality may be criminalized, funding can go to LGBT communities in organizing and in safety that might not be covered by local governments. Collective grant making fills in the gaps that are left by government and can respond to economic inequalities, health disparities, and human rights abuses that tend to fuel the HIV epidemic, as well as other pandemics.

How have the political attacks against PEPFAR changed funders’ views on HIV and AIDS health-care access?

I think there’s a bigger awareness among human-rights funders in particular of the environment that we’re in right now — understanding that the communities which tend to be most at risk for human rights abuses intersect very highly with those impacted by HIV and AIDS. There’s some really interesting data that just came out showing whether or not a society is open as a democracy is associated with HIV prevalence rates.

I’m concerned we are losing some donors due to the sense that somehow HIV has been resolved.* But you don’t have to go very far. Look at the U.S. South, where women and Black folks are among the highest risk and having the highest rates of new infections. In the Global South, women and girls represent more than half of new HIV infections worldwide. It’s important that women funders and those that care about racial justice understand there’s this real intersection.

[*Editor’s note: About 39 million people globally were living with HIV in 2022. In the United States, 1.2 million people had HIV in 2021, the most recent year this data is available.]

The new report from Funders Concerned About AIDS confirms that a lot of grant makers have stopped giving in this area. Do you think it’s because HIV/AIDS doesn’t feel like a pressing issue anymore?

I think it is. I think many working in philanthropy tend to be in larger cities that tend to be better resourced and with better health systems. We are personally less impacted compared to 20 years ago when we saw good friends become quite visibly ill and die.

Rizwan Tabassum, AFP, Getty Images

But we must realize that the experience in New York or Washington, D.C., or London or Amsterdam or San Francisco is not the universal experience. We still have millions of people who are vulnerable, living with HIV who don’t have access to regular treatment, millions of people who are at risk who don’t have good access to prevention, like PrEP, that works.

Your report also notes the limited number of grant makers for HIV/AIDS interventions. How is that a challenge?

That is the other piece of this puzzle. I’ve definitely talked to institutions who say: I know that institution X is giving so much and institution Y is giving so much — is my little grant going to make a difference?

My answer is: Absolutely. We do have an over-reliance on two funders that collectively represent two-thirds of global HIV philanthropy — the Gates Foundation and Gilead [Sciences]. It’s wonderful they are investing in this space and really critical.

But the other one-third of collective funders are also equally important because they are funding groups and work that wouldn’t be happening otherwise, and we need more of them. We know right now that private philanthropy is still not anywhere where it needs to be when it comes to adequately resourcing the HIV response, especially when it comes to gay men, trans people, women and girls, sex workers, those who use drugs — in general, the most vulnerable groups, especially if you’re looking at the U.S. South or Global South.

There are also interventions, like harm-reduction work, that are underfunded right now. We know there are a lot of communities of color that still do not have access to the basic care and resources they need. We need more funders in the space, not fewer.

Reporting for this article was underwritten by a Lilly Endowment grant to enhance public understanding of philanthropy. The Chronicle is solely responsible for the content. See more about the Chronicle, the grant, how our foundation-supported journalism works, and our gift-acceptance policy.