As we write this report in 2023, we will reach several important milestones in the fight against HIV: the 40th year of the first HIV-related private grant, the 40th anniversary of the Denver Principles, and the 20th anniversary of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) among them. It also happens to be the 20th edition of this report, which highlights the landscape of HIV-related grantmaking in 2021— the year that commemorated the 40th anniversary of when the Centers for Disease Control and Prevention identified the first cases of what would come to be known as AIDS.
The convergence of these milestones, past and present, creates an apt moment to consider where we, the community of funders concerned about HIV and AIDS, have come from, where we are today, and what we need to reach our objectives.
When the first private grant was made, we could hardly have envisioned the impact philanthropy would have on the epidemic. The simple act of funders coming together and imploring one another to respond to a disease that was killing their colleagues, their partners, and their family members spurred a movement. What started with just five grants totaling $216,000 in 1983 has in 2021 reached $692 million across 187 funding organizations.
For 20 years now, FCAA resource tracking report headlines have often focused on the caveats behind the overall funding levels, such as declining numbers of engaged grantmakers and an increasing concentration of funding among only a few organizations. This narrative was even present in our very first full edition on HIV-related philanthropy in 2003.
It is complicated to fully analyze or quantify what is driving these trends. Some funding organizations have closed entirely over the years; some no longer submit their grantmaking data. Others have changed priorities or shifted focus into intersectional areas such as broader global health, reproductive or maternal health, or LGBTQI spaces—often portfolios that still reach populations impacted by HIV. Often, such grantmakers don’t see themselves as “HIV funders” any longer; however, we would challenge this presumption.
For this 20th edition of our resource tracking report, we’re reflecting on the varied and valuable contributions that have come from this community of grantmakers. Importantly, what 20 editions of this report have taught us is that philanthropy is so much more than a ranking on the top funder list.
It is the collective action these data represent.
The HIV epidemic has long served as an early warning system—a microcosm of issues that will inevitably need to be addressed on a macro level. Because people affected by HIV are disproportionately impacted by stigma, discrimination, racial injustice, criminalization, migration, and conflict, among other factors, their experience brings to light what is often hiding in the shadows. Philanthropy has a history of driving seismic shifts in the response to the epidemic, seeking to address those shadowy challenges head-on.
We are once again being called for such a shift at this very moment in time.
Despite decades of progress in science, treatment, and prevention, 38.4 million people are living with HIV globally. That is more than the entire population of Canada or Morocco. This includes 1.5 million new HIV infections in 2021. At the same time, increasingly harmful legislation impacting the rights and health of people living with and most at risk of acquiring HIV is on the rise around the world. Attacks on LGBTQI lives, reproductive justice, racial justice, and access to healthcare abound. The common theme in these issues is their likely disproportionate impact on Black and brown people and LGBTQI communities —populations among the most impacted by the HIV epidemic. But rather than divide us, these attacks must unite us by highlighting the connections between all of our work.
Philanthropic funders have helped to drive enormous progress in the fight against HIV by filling in gaps in the government response, supporting advocacy, and responding to civil society in ways the public sector cannot or will not.
From the very beginning, HIV-related philanthropy has been rooted in and informed by the HIV community. By convening and listening to grantees and advocates on the front lines, funders have helped launch pioneering research for prevention, new treatments, and vaccines; provided support for sexual and reproductive health education; provided support for needle exchange and other harm reduction efforts; and more. We know that early treatment initiatives created with philanthropic dollars led to the creation of the Ryan White Program, and that foundations brought together community advocates to create what became the first U.S. National HIV and AIDS Strategy. Globally, corporate funding efforts helped establish care and treatment initiatives and infrastructure that are now being leveraged to prevent tuberculosis and address cancer and other noncommunicable diseases. Over the past several years, philanthropy has moved nimbly to address the COVID-19 pandemic, racial justice, and threats to our democracy—issues that intersect deeply with HIV. In fact, decades of the HIV response built the infrastructure and a workforce that helped adapt and respond to the COVID-19 pandemic and supports continued efforts around pandemic preparedness and global health security.
So, are you a funder concerned about HIV and AIDS? Before you answer that question, we urge you to think about the issues you do fund. Think about the populations most impacted by those issues. We would venture to guess that people affected by HIV compose a significant percentage of that group.
Whether it’s a grant for a large-scale global research initiative, support for a food pantry, a microgrant to female business owners, core support to a network of health or human rights advocacy organizations, or a small grant that allows a local AIDS Service Organization to provide condoms at a community event, every grant impacting healthcare, human rights, and justice counts and moves us closer to the end of HIV.
We hope this year’s report will illuminate why philanthropy is critical to ending HIV. We also hope that these data help to build the case for why your grantmaking is a powerful part of this work.
Our role is clear. We have fewer than 10 years to reach the United Nation’s Sustainable Development Goals, which include the target to end HIV and AIDS by 2030. Yet, in 2021, as this report details, HIV-related philanthropy was flatlining. It is mission-critical for our community to come together and recommit to fully financing the global HIV response. We must do more.
Let’s use this year’s milestone moments to raise our collective voices and lift up those who most need to be heard, to advocate for continued progress, and to eradicate the obstacles that continue to stand in our way. We need you now more than ever.
Funders Concerned About AIDS