What You Need to Know

General operating support—unrestricted funding that can be used for any purpose—remains the most requested need among communities responding to HIV. In 2021, funding for general operating support totaled $45 million, a $9 million (17%) decrease from 2020, representing only 7% of overall HIV-related philanthropy for the year. When we look at general operating support over the past four years for which we have consistent data, we see a trend of flat funding over time with some fluctuations each year. In 2020 we saw a jump in funders offering general operating support and flexibility in response to the challenges of the COVID-19 pandemic. There was hope that this strategy would be sustained at the very least throughout the pandemic, and hopefully beyond, but in 2021 the total slipped back down, along with the overall COVID-19-related funding total.

In 2021, support for capacity building and leadership development increased by 5% from 2020, totaling $69 million. Since the benchmark year of tracking funding for this category in 2016, we have seen an upward trend. We track funding for capacity building and leadership development opportunities within supported organizations as well as grants that fund organizations that do this work externally in their communities. This work includes internal training and hiring external support as needed. Providing the time, support, and necessary resources for community-led organizations to foster the growth of new leaders and build their internal capacity is pivotal to the sustainability of the HIV sector.

In 2021, funding for social services increased by $10 million (12%). However, when we look at HIV-related philanthropy for social services over a six-year period, increases over the past two years have only brought funding levels back up to where they were prior to a 2019 drop, making long-term funding to this category stagnant.

As the COVID-19 pandemic disrupted daily life around the globe in 2020, philanthropy responded quickly with a 26% increase in funding for social services that same year, including support for food and nutrition, housing and rent, and psychosocial services. It is important to note that many of the needs supported within this category are tied to social determinants of health, or “circumstances in which people grow, live, work, and age,” and a lack of support for these basic necessities can further fuel the HIV epidemic.

In 2021, HIV-related philanthropy that responded to or was impacted by COVID-19 totaled $48 million, an $18 million (27%) decrease from the funding tracked in 2020. This trend seemed to relay across the entire sector, with Candid and the Center for Disaster Philanthropy reporting a 31% decrease in overall philanthropic funding responding to the COVID-19 pandemic from 2020 to 2021.

Read more about the impact of the COVID-19 pandemic. 

Pre-exposure prophylaxis (PrEP) is the use of HIV medication to reduce a person’s chance of getting HIV from sex or injection drug use. In 2021, funding that included work on PrEP totaled nearly $100 million, a dramatic increase of $63 million (172%) from the prior year. The bulk of this increase was related to large pools of research funding on long-acting oral and injectable prevention options. Prior to this increase, PrEP-related funding was fairly stagnant over the course of five years.

In the U.S., where data is more available than other regions, only 23% of people that could benefit from PrEP were prescribed it in 2019, the majority of which (63%) were white. Only 8% of Black/African American people that could benefit were prescribed PrEP in the same year. Predictions indicated that there could be between 2.4 and 5.3 million PrEP users worldwide by the end of 2023; however, due to continued COVID-19-related disruptions to HIV prevention, lack of consistent access to surveillance data, and increasingly restrictive political environments in some countries, it is difficult to assess the current global uptake of PrEP. Many of the gains in access to and coverage of PrEP are because of the work of civil society and advocacy organizations, yet only 17% of PrEP funding in 2021 was for advocacy-related work.

In 2021 HIV-related philanthropic funding for advocacy, including human rights-related strategies, reached an all-time high of $150 million. This marks a $20 million (15%) increase from 2020, which itself saw a $13 million (11%) increase from the year prior. Looking at funding trends over the past seven years, this bodes well for the future, as we saw relatively flat funding for advocacy coming from philanthropy prior to 2020.

Philanthropy is often the only source of funding for advocacy in the HIV landscape, which is heavily dominated by public funding dollars that are frequently bereft of flexible, trust-based, long-term funding to sustain long-gain advocacy efforts. These efforts are often the only path toward overturning systemic barriers that maintain the burden of HIV on the most impacted communities. In addition, philanthropy plays a strategic role in supporting advocacy efforts that ensure that multilateral and bilateral funding streams—like PEPFAR and the Global Fund, which account for 37% of global resources for HIV— continue to have sustained or increased support in the U.S. Congress. At the writing of this report, anti-gender and anti-abortion movement efforts are threatening the reauthorization of PEPFAR, which jeopardizes millions of lives and threatens to turn back decades of progress in the fight against HIV and AIDS.

While FCAA does not receive extensive data on racial and ethnic categories outside of the United States, we want to highlight ways that we are able, at present, to track funding reaching migrants/refugees and racial and ethnic minorities globally. The accompanying chart shows funding trends over time to three different populations: migrants/refugees, ethnic and racial minorities (outside the U.S.), and Indigenous populations (outside the U.S.).

While there is some overlap in funding to these communities, the largest recipient group of the three is consistently migrants/refugees, reaching almost $10 million in 2021. More than half of that funding goes to communities in Western and Central Europe, and about a quarter of it goes to the U.S. In the coming years we expect to see increased funding, specifically reaching Eastern Europe and Central Asia as a direct result of the Russian invasion of Ukraine and the millions of displaced people in the region. With increasing criminalization of LGBTQI communities in Eastern and Southern Africa, we may begin to see efforts to support displaced people and asylum seekers fleeing persecution in the coming years there as well; however, this year’s report on 2021 funding does not reflect those changes.

HIV-related philanthropy for BIPOC communities within the United States reached a new high of $58 million in 2021. That marks a $16 million (39%) increase from 2020, which also saw an $11 million (37%) increase from the prior year, but still only represents 22% of total HIV-related philanthropy in the U.S. Of that $58 million, 46% went to the U.S. South, the region most heavily impacted by HIV in the U.S. A seven-year glimpse at funding shows an overall upward trend, with a consistent rise in funding since 2018.

This category includes funding specified for “people of color” or “BIPOC” communities, as well as grants for any of these four populations within the U.S.: African American/Black, Latinx, Asian/Pacific Islander, and Indigenous communities. Because many grants reach more than one of these populations, particularly funding broadly specified for BIPOC communities, which we code for all four, we have created an aggregate total to ensure that we count funding from each grant only a single time. We’ve included an additional chart that breaks out the funding per population. This chart shows a need for more specificity in grants data or intentionality in funding decisions, as BIPOC communities are often referred to in the aggregate, which clouds a clear understanding of individual reach. We will continue to advocate for improved data collection that will refine our understanding of how funding reaches different racial groups in the U.S.

Black and African American communities within the U.S. are disproportionately impacted by the HIV epidemic, representing 40% of new HIV infections in 2021. Latinx populations are also heavily impacted, representing 29% of new HIV infections in 2021. As we consider the impact of the “racial reckoning” in the early 2020s, the trends we see around funding to Black and African American populations specifically, and other communities of color, are incredibly important. For recommendations on how HIV-related philanthropy can hold themselves accountable to anti-racist funding that dismantles structural racism, increases funding for racial equity, and moves us toward racial justice, please read FCAA’s “Racial Justice in HIV Philanthropy Guiding Principles.”

Funding for key populations—including transgender persons, gay men and other men who have sex with men (MSM), people who use drugs, and sex workers—saw an upward trend from 2015 to 2021. In addition, it reached a new high of $110 million in 2021, which accounts for 16% of all HIV-related philanthropy for that year. In contrast, HIV-related philanthropy for the general population—often grants that support medical research or general awareness and prevention activities—was 30% of total funding in 2021. Key populations and their sexual partners, however, account for 70% of all people living with HIV in the world, revealing a significant gap between resources and needs, and an opportunity for funders to equitably support those most impacted by HIV.*

As many of these identities overlap for individuals, there are understandable concerns about grants that reach more than one of the mentioned populations, and the resulting duplication of funding. The first chart below, Key Populations Combined, shows funding data with duplication removed, meaning grant dollars are only counted once if they reach any of the included populations. To see breakdowns of individual funding for each population, refer to the second chart below, Key Populations Disaggregated.

One of the most critical roles that philanthropy plays in the HIV landscape is funding for populations that are most impacted by the epidemic and who face severe systemic inequalities and violence in their daily lives. Currently these populations—LGBTQI communities in particular—are under attack globally, with legislation that criminalizes their existence and basic rights emerging, from the U.S. to Uganda.

Specifically, in Uganda, the 2023 Anti-Homosexuality Act now deputizes citizens—including doctors and medical staff—to report any suspected homosexual activity. Within months of the passage of the law, some organizations reported a 60% decrease in service utilization at HIV-related clinics, where a positive HIV result can now lead to imprisonment, punishment, or worse. It has also resulted in egregious physical attacks against HIV-positive trans people trying to access care. This legislation will have a dangerous impact on LGBTQI populations and on the HIV response in Uganda.

Governments that criminalize their own people will not support them with public funding, so philanthropy is uniquely situated—and called upon—to step up and ensure that key populations are not left behind in the efforts to support communities living with HIV, end the HIV epidemic, and sustain the human rights of all people.

HIV-related philanthropy for women and girls— including trans women, in accordance with FCAA’s methodology—has hovered around $65-75 million for the past six years but shot up to $100 million in 2021, the highest total yet. The bulk of this increase came from research-related funding on biomedical HIV prevention methods that prioritized cisgender adolescent girls and young women (AGYW).

In 2021, according to UNAIDS, 54% of all people living with HIV were cisgender women and girls, and they accounted for 49% of new infections. Although transgender women and women who engage in sex work are at particularly high risk for contracting HIV, cisgender AGYW are, as a group, also especially impacted by HIV.

In sub-Saharan Africa, for example, AGYW ages 15-24 are three times more likely to be living with HIV than their adolescent male counterparts. Each week in 2021, 4,900 AGYW were infected with HIV globally, but 82% of those new infections occurred in sub-Saharan Africa.

HIV-related philanthropy to prevent pediatric HIV infection saw a huge increase in funding in 2021—from $6 million to $38 million—due to two large grants to organizations specializing in this type of work in sub-Saharan Africa. Prior to this surge in funding, however, resources for these efforts had been rapidly declining over the past five years. According to UNAIDS, the percentage of pregnant women on antiretroviral therapy (ART) rose from 17% in 2010 to 85% in 2020, and HIV infections among children declined by 52% in the same period. While recent successes in preventing pediatric HIV infection may be responsible for the decline in philanthropic investments, there are still huge discrepancies based on location; for example, pregnant women in Eastern and Southern Africa have 95% ART coverage, while pregnant women in the Middle East and North Africa have only 25%.