The Role of Foundations in AIDS Funding
For more than a decade, foundations have played a small but powerful role in battling the HIV epidemic. In the past 13 years, foundation giving has totaled more than $350 million. Since 1994, independent foundations have given between $32 million and $35 million annually for AIDS research, care, and public policy development.
Society has struck a bargain with foundations: in return for being relieved of most obligations to pay taxes, foundations should work for the good of humankind. Ideally, foundations act as society's research and development arm, as did the Rockefeller Foundation from 1915 to 1945 in eradicating yellow fever and the Sarah Scaife Foundation in the 1950s by providing Jonas Salk with the necessary funds to develop the polio vaccine.
"Because foundations are not subject to the same political pressures that exist in government, they can be more informed and strategic," says Paul Di Donato, director of Funders Concerned About AIDS (FCAA), an affinity group created in 1987 to educate and mobilize grantmakers on AIDS funding.
Yet some research has suggested that foundations are not allocating funds as effectively as possible. A Michigan State University study of several of the large health funders found that they do not generally take the lead role in fighting new social ills. The study found that over a 10-year period, foundations became involved in four areas of health care-AIDS, Alzheimer's, the uninsured, and cost containment-only at the same time as or after government did, or at least after Congress had held hearings on the issues. In only two areas-minority health care and health outcomes research-did funders initiate grants prior to government hearings. The Robert Wood Johnson Foundation stood out as a consistent trailblazer in taking the lead in health policy areas.
A recent study by the University of California at San Francisco's Center for AIDS Prevention Studies also suggested that a significant portion of HIV prevention grants are not being targeted to programs and groups that could do the most good. An inordinate amount of funds are being allocated to populations whose risk of infection is relatively low and to prevention interventions that have been shown to be less effective.
The 1997 survey found that youth and women, two groups with rapidly increasing rates of HIV infection, received 25 percent of all funding. More disturbing, however, was the fact that three identified higher risk groups-homosexual/bisexual men, injection drug users, and people of color-each receive less funding than the general population, which includes many people at low risk for HIV infection.
The survey also found that effective programs, such as condom distribution and needle exchange, are overlooked by most funders. "Unfortunately, needle exchange, a program that has been shown to be successful in preventing HIV infection, was not well supported by private funders," says the study's author, Joshua Schechtel. "This is especially tragic because needle exchange programs are denied federal funding as well. Private funding could offset the lack of government funding."
In examining where funding decision makers obtain information for making their decisions, the study found that more than half the respondents listed print media as the most useful source of information. Other resources included site visits with grantees, informal dialogues with colleagues and friends, and professional publications. Regional affiliation groups were cited as useful sources of AIDS information by 29 percent of respondents, but only 13 percent used other affiliation groups to gather information, an important finding since almost half of funders give AIDS-related funding through an affiliation group. Almost no funders contacted health departments or other HIV/AIDS councils.
As a result, some AIDS fundraisers fear that grantmakers' perceptions of AIDS will shift along with those of the public's, from a disease syndrome that is inevitably fatal to one that may be manageable. In 1995, AmFAR, the nation's largest non-profit source of research funds with a $16 million budget, cut its budget by 20 percent, blaming a drop in donations "on an increasingly complacent and resigned public."
Favorable Track Record
Shortcomings notwithstanding, say others in the philanthropic field, foundations have been a critical force in putting AIDS on the public agenda. Martha Gibbons, director of development at the Mandel School of Applied Social Sciences at Case Western Reserve University and a researcher in AIDS philanthropy, believes foundations have a good historical track record.
"We have to consider that at the beginning of this epidemic there was great confusion about who was at risk, how the virus was spreading, and what role the government would play in eradicating the epidemic," says Gibbons. "Several foundations stepped up to the plate when there were no education and prevention programs on a national scale. Early on in the epidemic the Robert Wood Johnson Foundation funded local, grassroots AIDS prevention and education groups, and the Ford Foundation created the National AIDS Fund, which challenged community foundations around America to define and fund the problems in their local communities.
"The foundations helped to 'legitimize' AIDS," adds Gibbons. "These programs provided the models for many of the federal programs that were eventually created. Their approach to community-based care was incorporated in the federal legislation for people with AIDS, such as the Ryan White CARE Act of 1990."
"In an ideal world, organized philanthropy would fund exactly those proven yet controversial interventions and programs that government does not," says FCAA's Di Donato. "Really controversial HIV prevention programs aren't high on most funders' lists, however, so at the end of the day, some problematic and significant funding gaps remain. Yet organized philanthropy is taking far more risks than the federal or state governments. It's not where we'd like it to be, but foundations have certainly been more willing to take risks than government."
"The startling reality that AIDS is now, and will continue to be, a disease that primarily affects communities of color has forced the government and AIDS service organizations to evaluate the effectiveness of programs developed in response to the disease's initial epidemiology," says Mario Cooper, a member of the Harvard AIDS Institute's International Advisory Council. "Foundations have yet to engage in this transition, and must do so quickly. As these historically underserved populations try to cope with the onslaught of HIV, foundation leadership is critical to ensuring that the nation's efforts are consistent with the known potential for devastation."
To help foundations make informed, thoughtful decisions, FCAA keeps HIV prevention in front of its audience, which includes almost 90 percent of the AIDS grantmakers in the United States. FCAA conducts half-day briefings around the country on which prevention programs work and which do not work. "How many decision makers from the government voluntarily engage in this sort of activity?" asks Di Donato.
The Future of Funding
Researchers cannot say with confidence where future foundation funding for AIDS will come from and what types of programs will be funded. The only certainty is that the epidemic is far from over.
The international picture is even more disturbing than the national picture, but many U.S. foundations, with the notable exception of the Ford Foundation, do not fund internationally. UNAIDS estimates that more than 30 million people worldwide are living with HIV. North America has more than 860,000 people with HIV, South and Southeast Asia have 6 million infected people, and sub-Saharan Africa has nearly 21 million infected people.
"None of these numbers," says Cooper, "suggest that we can afford to decrease our vigilance or shift our funding focus away from AIDS."
-Susan Cronin Ruderman, based in Arlington, Massachusetts, is a consultant for non-profits.
  
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