A Quiet Exodus: Funders Exit HIV Giving Even as Equity Gaps Grow

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Funders are quietly exiting HIV philanthropy, and we need to talk about it.

Our organization, AIDS United, received word this year from two longtime corporate funders — including one as recently as two weeks ago — that they will no longer provide charitable funding for HIV. 

And it’s part of a more significant trend.

According to data published by Funders Concerned About AIDS, since reaching a high watermark in 2008, HIV-related giving has decreased a staggering 17% when adjusted for inflation. The report also shows an ever-increasing number of funders leaving the space.

This exodus leaves HIV organizations to rely more heavily on other funding sources. 

Most organizations serving people living with and vulnerable to HIV are modern-day Robin Hoods. They reinvest the money they receive from their clients who have health insurance to pay for vital, lifesaving HIV prevention and treatment services for people who need it most. 

They need to rely more heavily on people who have health insurance as other funding evaporates. This shift has the dire consequence of perpetuating racial and economic inequities.

At the same time, the 340B Drug Pricing Program — an obscure but vital federal program that helps fund many HIV services — is under attack. The 340B program requires pharmaceutical companies to sell their drugs at a discount to healthcare providers that serve poor and rural communities, like many HIV service organizations. Healthcare providers then reinvest those savings into their services and programs, like HIV testing and prevention, transportation, and food and nutrition services. 

Drug companies have already pulled back from this program, resulting in fewer dollars being spent among the communities of greatest need.

We also write this as negotiations regarding funding for the HIV safety net are happening in Congress. Republicans in the House have committed to drastically slashing HIV funding.

As three Black leaders of a national HIV organization, we cannot help but note that all of this is happening against the backdrop of a widening gap between how the HIV epidemic impacts white communities and how it impacts communities of color.

More than 1.2 million people are living with HIV in the U.S., and the vast majority, 72%, are people of color. 

The numbers are equally stark when we look at new diagnoses. White people make up 60% of the U.S. population, but account for a quarter of new HIV diagnoses. Black people, on the other hand, make up 12% of the population but account for 40% of new diagnoses. Similarly, Latine people, about 18% of the population, represent 29% of new infections.

There is nothing inherent about Black and brown bodies that makes us more vulnerable to HIV. The virus is opportunistic in every way and takes advantage of the systemic inequities embedded in our society. 

Look, for example, at the data the Centers for Disease Control and Prevention released in September regarding pre-exposure prophylaxis, or PrEP. PrEP is a medication that people who do not have HIV can take to prevent HIV. It was approved more than a decade ago, and it is one of the greatest medical innovations in a generation.

The CDC estimates that there are 1.2 million people in the United States without an HIV diagnosis for whom PrEP could be beneficial. The September report shows about 30% of those 1.2 million are on PrEP, up from 13% in 2017. That is a cause for celebration. 

However, looking more closely at the data, we see one alarming statistic. The lion’s share of that increase comes from one racial demographic: white people. 

Nearly 4 out of every 5 white people for whom PrEP would be beneficial receive the medication. But only one out of every five Latine people and a shocking one out of every 10 Black people who need PrEP are getting it.

Some might look at these statistics and think only the white community understood the assignment. The problem isn’t understanding the assignment; the curriculum is flawed. In truth, systemic racism has prevented Black and Latine people from even entering the school.

It is also hard to ignore the optics. As the epidemic impacts white communities less and less, both private and public funding is evaporating. 

While the systemic improvements needed are myriad, the one we want to focus on today, the 35th anniversary of World AIDS Day, is HIV-related funding.

At a time when funders are exiting the HIV space, we desperately need new funders and more funding from existing funders. If our HIV service organizations had reliable, sustained funding streams, they’d no longer need to play Robin Hood and would be better able to serve the Black and brown communities that the HIV epidemic has hardest hit. 

These funds must also be significant, easy to access, and cover multiple years and general operating expenses. They must come with no strings attached or massive reporting requirements. Funders need to make a long-term commitment. A funder deciding they’re no longer interested in HIV or infectious disease work is devastating to efforts to end the HIV epidemic. 

These investments need to be made in community-led initiatives. Those closest to a problem know how to address it best. And so local communities should be trusted and empowered to decide what their communities need. If a funder does not have connections into the community, they should find an intermediary who can help bridge that gap. 

Community leaders also need the training to expand and hone their skills and networking opportunities so they see what creative initiatives other communities have found successful. If a funder cannot provide this directly, they should fund this work at organizations that do capacity-building and technical assistance work.

Funders who engage in advocacy need to push Congress to fund the federal HIV programs fully. And if a funder does not engage in advocacy, they should support community-led advocacy efforts at national and state-based organizations. They should also consider sponsoring AIDSWatch, the largest constituent-led advocacy event that brings the voice of people living with and vulnerable to HIV directly to Congress.

Today is World AIDS Day. It is a day when we pause to remember the many people who we have lost to this epidemic. It’s also a day to recommit to ending the epidemic. 

AIDS United is the fifth-largest HIV-related funder in the United States and third largest when it comes to supporting communities of color. We are committed to continuing our efforts to fund the HIV field through strategic grantmaking, transforming the sector through capacity-building and technical assistance, and pushing Congress and the president’s administration through policy and advocacy. 

But we cannot do this work alone. We’re calling on new funders — especially funders who work in social justice and racial equity — to join us in this work, and for current funders to redouble their efforts. 

The end of the epidemic is possible. It will take a lot of work — work that must be better funded. 

Athena Cross is AIDS United's vice president and chief programs officer. Carl Baloney Jr. is AIDS United's vice president for public affairs and chief policy officer. Jesse Milan Jr., J.D., is AIDS United's president and CEO.