The 40th Anniversary of HIV: From Apathy to Urgency & Back Again?

Guest Author: John L. Barnes

I graduated from high school in June 1981—the same week that the first AIDS cases were reported in the U.S. The epidemic has spanned my entire adult life, two generations have been forced to combat it, and many people living today don’t know a world without HIV and AIDS.

It’s interesting to consider that the COVID-19 crisis occurred in the months immediately preceding this “anniversary”—a word that seems far too celebratory for this moment. As many people have pointed out, much about COVID feels eerily reminiscent of the early days of HIV. Both diseases disproportionately affect people of color and those living in poverty. Both received a lagging government response. And both have been accompanied by misinformation, fear, and stigmatization of people who are infected.

As we emerge from the most acute phase of the COVID crisis, we see other similarities. Despite all of the progress we have made against HIV and AIDS, there are still far too many people in the world, including parts of the U.S., who are unable to benefit from the advancements. As the COVID vaccines roll out—quickly in some countries, but not at all in others—it’s a similar story of haves and have nots.

While much has changed since 1981, much also remains the same. We went from apathy to urgency, but I fear we are making our way full circle.

FCAA’s origins stem from that sense of urgency. In the early days of the fight against HIV, a group of grant makers dedicated to bringing philanthropic attention to the epidemic founded the organization. At that time, we had a few funders giving a little money. Over time, the number of funders and the level of resources grew. Today, however, we are back to having a few funders, though they are giving quite generously.

If you look at the raw numbers in FCAA’s most recent resource tracking report, 2019 saw the highest level of philanthropic HIV funding ($706 million) on record. But there is real cause for concern as a dwindling number of funders focus on HIV. This puts us in a vulnerable position should this small group of investors shift their priorities elsewhere. In fact, the rise in 2019 funding was driven almost entirely by a single, $100 million payment from one funder, belying what would have otherwise been an overall decrease in HIV-related philanthropy. 

In 1981, marginalized communities of gay men were most impacted by HIV and AIDS. It took a long time for people who were not directly affected to care about the epidemic. We find ourselves in much the same position now. Today, it is LGBTQ, Black, Indigenous, and people of color communities in the U.S.—and key populations[i] globally—that are most impacted. Yet, a misperception that “AIDS is over” continues to be perpetuated.

But there are things that give me hope on this anniversary.

Over the past 40 years, an entirely separate service system for HIV and AIDS has been built by people living with the disease and those who love them. When the COVID-19 crisis happened, much of the worldwide response was enabled by this infrastructure. It’s this type of progress that makes me optimistic.

Seeing public health and global health take the spotlight also makes me hopeful. While HIV does not affect everyone, COVID certainly has. As a result, there is a much broader interest in things like vaccine research. We can leverage that attention, going forward, to benefit the fight against HIV.  

We are also gaining clarity on how to address some of the barriers to ending HIV and AIDS as a public health threat. The philanthropic community has talked for a long time about breaking down silos, primarily those that exist between public health and human rights funders, or between LGBT and HIV funders. Through the development of the recent Converging Epidemics: COVID-19, HIV & Inequality report, it’s become evident that the silos we have to address are, additionally, those that exist between funders, implementers, and beneficiaries. The balance of power needs to shift; intermediaries, who are closer to those receiving funding, must have a greater share of power. And organizations receiving funding must be part of the decision-making process. In short, we need to blur the lines to have more impactful grant making. That’s why practices like participatory grant making make me hopeful and optimistic.

The Converging Epidemics report also highlights the way marginalized communities have always taken care of themselves. I am encouraged to see more money move to that process. Similarly, I am excited to see trans people and sex workers stepping into decision-making roles, starting organizations, and becoming funders. What gives me the most hope is seeing the incredible leadership coming from constituent communities.

To ensure that we never have to acknowledge a 50th anniversary of HIV, we must reevaluate our funding practices and the level of priority we are giving to the epidemic. We know what to do; we just need to do it. Let’s not come full circle.

[i] The term “key populations” refers to the following population groups: gay men/men who have sex with men, people who inject drugs, transgender people, sex workers, general LGBTQ, and key affected populations not broken down.