At Risk: Can Funders Preserve Momentum in the AIDS Fight?

As they geared up for an annual summit to be held just weeks after the 2016 election, the folks at Funders Concerned About AIDS (FCAA) expected one result. They got another. And while funder affinity groups across the board have been giving Trump’s presidency close attention, FCAA sees a particularly tough fight ahead. John Barnes, who leads FCAA, told me: “An end to AIDS isn’t possible under current Trump priorities, and we risk losing decades of investment.”

How did it come to that, and what are FCAA and its members doing to marshal philanthropic support in an uncertain time? According to Barnes and his colleague Sarah Hamilton, who heads operations at FCAA, it all comes down to advocacy. 

Thirty years ago, when the affinity group got its start, the initial AIDS crisis was in full swing and federal will was inadequate to the task of containing the disease. Through successful advocacy and a rapidly widening field of philanthropic supporters, FCAA enabled what has become an international fight many billions of dollars in scope. 

According to Barnes, the Trump presidency could seriously undermine that effort. By defunding programs like the President's Emergency Plan For AIDS Relief (PEPFAR) and reinstating the “global gag rule” on federal aid to international family planning programs, the current administration risks perpetuating a disease to which “the end was in sight.” The United States currently plays a leadership role in the international fight against HIV/AIDS, and Barnes believes Trump may very well step away from that role. 

While philanthropy only makes up a sliver of the total funds disbursed to fight HIV/AIDS (the bulk is government funding), it’s a key means of leverage. Unrestricted funds for advocacy—even if they only comprise 2 percent of total anti-AIDS funding—can have huge sway by determining where the other 98 percent goes. Research dollars can also move the needle, so long as the fruits of that research are deployed well. 

Messaging is another key factor. Over the course of the past 30 years, how people talk about HIV/AIDS has evolved. With the development of drugs that can prevent people from getting sick, recent choruses included “the end is in sight,” and “AIDS is not a gay disease,” referencing the fact that plenty of non-LGBTQ men, women and children are infected, especially in low-income countries. That second point may be true in many places, but here in the U.S., HIV/AIDS disproportionately impacts the LGBTQ community, especially vulnerable groups like gay men of color in the South, as we recently reported. 

Related: "A Hotbed for HIV and AIDS." The Duo of Funders Meeting LGBT Needs in the South

Barnes reflects that such well-intentioned messaging “may have led to greater apathy,” hamstringing a global health effort that has the tools to curtail and maybe even eliminate the threat. “The only thing stopping us is not having the resources to employ those tools on scale.” That’s a disheartening notion, but one we hear all too often on the global health front. Given the ongoing death toll, it’s worth posing the question: Are funders doing enough?

Unfortunately, philanthropic funding against HIV/AIDS has flatlined over the past 10 years, hovering around the $600 million mark. This may be due, in part, to overzealous claims about an end being within reach. Additionally, there's only a finite number of major funders in this space—and fewer over time. FCAA reports that the total number of funders has dropped, while top-tier funders account for a greater percentage of the total. For a wealth of detailed data on the HIV/AIDS funding landscape, check out FCAA’s latest tracking report

Foremost among these is the Gates Foundation, whose HIV/AIDS funding hovers around $200 million annually. Stalwarts like the Ford Foundation, the Wellcome Trust, the Conrad N. Hilton Foundation, the Elton John AIDS Foundation, the M.A.C. AIDS Fund, and amfAR have kept up their sizable giving. Pharmaceutical companies are also heavy hitters in the HIV/AIDS funding space, as we've often reported in the past. They include ViiV Healthcare, Johnson & Johnson and Gilead Sciences Inc., which has recently bumped up its giving to rival that of Gates. According to Barnes, corporate giving is often directly tied to how a company’s products are faring. The money “ebbs and flows based on when a company has a drug that’s doing well.” 

In the near term, FCAA sees its role as ensuring the funders who are investing in the HIV/AIDS fight deploy their resources as effectively and comprehensively as possible. That means identifying the gaps: which regions, communities, and populations are underfunded. It also means increasing funder support for advocacy done right. Tactics include providing general operating support, multi-year funding, and distinguishing success in advocacy from success in service delivery. 

At the same time, Barnes and Hamilton emphasize a pressing need to work alongside other funder communities. FCAA cites its collaboration with Funders for LGBTQ Issues and funders’ groups working on reproductive equity and cybersecurity. Indeed, intersectional work has become an urgent theme in 2017 for almost every funder affinity group we talk to. But FCAA's concerns about advocacy highlight the inevitable role government plays to heal the world—or keep it sick.