Creating Shared Language: Data at the Intersection of HIV and Human Rights

This past July, Funders Concerned About AIDS (FCAA) launched a new infographic detailing $85 million in HIV-related philanthropy that addresses human rights in 2014. This data offered an important new benchmark: the first analysis of HIV philanthropy for human-rights related efforts.


Why is this important? We know that the most marginalized populations tend to be those directly and indirectly excluded from life-saving health services, including HIV prevention, treatment and support. An estimated 40-50% of all new HIV infections worldwide occur among people from key populations (i.e. men who have sex with men, sex workers, transgender people, people who inject drugs) and their immediate partners. Further, 72 countries have laws that specifically criminalize HIV non-disclosure, exposure or transmission, further complicating the landscape for HIV treatment and education.

This startling context is what first brought FCAA and the International Human Rights Funders Group (IHRFG) together in 2014 to begin brainstorming how to help mobilize awareness of, and a coordinated response to, the intersection of HIV and human rights. At first glance, our networks address two distinct fields. But as this landscape came into focus, so did our recognition that “HIV funders” and “human rights funders” are not separate entities supporting separate work. Where and how do these fields converge? Who is working at this intersection already – and do they realize it?

We knew the first step to engaging funders was information. Both FCAA and IHRFG conduct their own separate resource tracking efforts[i] with unique methodologies, timelines, and taxonomies – and previous analyses of human rights funding for HIV/AIDS had only been able to use proxy estimates based on advocacy-related funding. To dig deeper into this nexus, we had to decode our efforts to ensure both networks were, essentially, speaking the same language. This started by reviewing our separate data streams to identify the organizations funding at this intersection, and then working to ensure they were connected to both FCAA and IHRFG data collection processes. FCAA also consulted IHRFG’s definition of human rights philanthropy as a guide to identify related efforts within HIV philanthropy.

The process allowed FCAA to identify $85 million in funding from 84 global funding organizations, comprising 1124 grants given to 845 grantee organizations, which amounted to only 14% of total private HIV philanthropy in 2014. The infographic highlights that 27% of this funding went to East & Southern Africa, followed by 22% to the U.S. and 14% to global efforts (without a specific target country or region), with 45% of funding disbursed to middle income countries. The analysis also identified that only 19% of HIV philanthropy for human rights efforts was directed towards key populations.

IHRFG’s research shows over $35.5 million and counting of human rights-related philanthropy focused on people living with HIV/AIDS in 2014. (Our data set does not include corporate donors, as FCAA’s does, which accounts for some of the additional support FCAA was able to identify.) The pot includes self-identified HIV and human rights funders, along with scores making just one or two rights grants focused on HIV/AIDS. Grants range from the obvious intersections – work to end discrimination based on HIV status – to the surprising – such as harm reduction for young women drug users in central Asia or using radio to spark dialogue on HIV issues among youth in Southern Africa. Data geek or not, an exciting aspect of both network’s findings is the idea that funders supporting rights-related work around HIV might not recognize it or identify as working within this nexus.

In parallel, FCAA and IHRFG collaborated on a mechanism to help drive this new shared data and language into action by launching the Human Rights and HIV Funder Working Group (HRHIVFWG) in December 2014. The Working Group is a forum for donors to examine the short term emergency needs of organizations addressing human rights in the context of HIV as well as to coordinate more effective support of global and domestic advocacy by and for HIV and human rights groups to help them sustain and evolve their work. To date, this effort has consisted of funder meetings and panel discussions at FCAA and IHRFG conferences, a listserv to share funding opportunities and news, and ongoing steering committee calls to identify emerging points of critical intersection, such as the increasing closing space for civil society.

A lesson from all of this is that, while often a slow process, building shared language and creating the champions and the mechanisms to deliver it are absolutely critical to do this work effectively. This infographic and funder working group are the result of several years of conversations, strategy and partnerships built over email, teleconferences, and unending flexibility. Now, with the first step of creating a data baseline complete, we can now move forward to measure and analyze funding trends and catalyze conversation among those working at this intersection. These data and discussions can help the working group, as well as the broader philanthropic field, as they advocate to increase awareness and funding at the intersection of HIV and human rights.

[i] Learn more about FCAA’s resource tracking at: Learn more about IHRFG’s research at

Many thanks to Sarah Hamilton from Funders Concerned About AIDS and Sarah Tansey from the International Human Rights Funders for this piece. Be sure to follow them on Twitter at @FCAA and @IHRFG.

One thought on “Creating Shared Language: Data at the Intersection of HIV and Human Rights

  1. Pingback: Creating Shared Language: Data at the Intersection of HIV and Human Rights | IHRFG

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