Like it or not, the AIDS epidemic in the United States is about to come of age. June of 1981 saw the Centers for Disease Control and Prevention report a cluster of cases of a certain rare pneumonia. And now, more than 650,000 AIDS cases later, the epidemic is six months from the threshold of maturity, age 18. Many of the    groups that have tried to staunch this wearying epidemic—AIDS service organizations (ASOs), research foundations, activist groups—are now teenagers as well, and like a lot of teens, they find themselves suddenly strapped for cash. If they had any to begin with.

“The buzz out there,” says Tides Foundation program officer Peter Teague, who works with AIDS donors and grantees, “is that funders are backing off, finding other priorities, finding AIDS less compelling than they did five or 10 years ago.” Indeed, foundation giving to AIDS groups was low in ’95 and again in ’96 (the last year for which figures are available), coming in at approximately $37 million, down from an ’89 high of $42 million, the nonprofit Foundation Center reports. In many places around the country, private giving, which can provide anywhere from 20 percent to 50 percent of an organization’s budget, is level or on the decline.  

Dramatic examples of decreasing donations can be found at the nation’s two largest ASOs. In its 1998 fiscal year, New York City’s Gay Men’s Health Crisis (GMHC) found itself $4.5 million under budget, its ’97 income of $27 million having dropped to $22.5 million as a result of decreased returns from direct mail, special events, foundation grants and major individual donations; only the group’s government contracts were stable. AIDS Project/Los Angeles (APLA) has “had a falloff in corporate and foundation support of about $1.5 million,” says Executive Director Craig E. Thompson. “Our total budget was $17 million for this year, and we’re at $15.5.”  

Around the country, AIDS groups are working harder and harder to raise the same amount of cash. This occurs at a time when private giving to the nation’s nonprofit sector has increased at a rate of 7 percent during each of the last two years, according to the American Association of Fund-Raising Counsel Trust for Philanthropy—a result, they say, of the booming stock market. The principal cause of the drop in AIDS funding, most professionals in the field agree, is the media-enhanced perception that protease inhibitors, first widely discussed at the Vancouver International Conference on AIDS in June 1996, amounted to a cure. “Since Vancouver,” says Stephen Mally, director of development at the AIDS Action Committee (AAC) of Massachusetts, “we’re having to repeat ourselves again and again: ‘The AIDS crisis is not over.’”

This isn’t an easy pitch today, despite mounting evidence that for many, protease-based combination therapy doesn’t work at all, loses its effectiveness or causes formidable side effects. “A number of times in any given week we hear from donors that AIDS is no longer such an urgent need,” Mally says, “or that they’re burned out”—another factor contributing to the leveling off of private AIDS giving, especially among individuals who have donated significantly in the past. Former GMHC board president Jeff Soref, himself a major donor, believes burnout is just the half of it. “It’s more competition. There are more organizations in the lesbian and gay community”—long a prime donor base for ASOs—“competing for the same money.”   

AAC’s Mally is happy to report that funding for his group hasn’t dropped off as much as GMHC’s. “The only area where we’ve seen a significant downturn,” he says, “is special events.” Getting people to participate has become increasingly difficult, he says; AAC’s AIDS Walk totals, like many around the country, are down—from $2.6 million in ’96 to $2.3 million in ’97 and ’98.

AAC, New England’s largest ASO, isn’t the only group affected by this 11 percent drop. Proceeds rom the AIDS Walk also go to some 20-odd area AIDS agencies and clinics. “For many groups,” Mally says, “that event is their lifeline.” Indeed, small ASOs, many based in communities of color where the epidemic is spreading fast, “are feeling the pinch more than large organizations,” says R. Faye Mathis-Lemons, manager of development at the National Minority AIDS Council (NMAC), a DC-based advocacy group. Even before the recent general downturn in giving, many NMAC member groups were playing catchup. Without sophisticated fundraising and public affairs staffs, most have had trouble attracting the kind of private giving that sustains larger groups. Few have the ability to draw massive foundation grants or a stable pool of four-to-five-figure donors.

“Our largest single donation is from Elizabeth Taylor, $250,000,” says Paul Davis, chief operations officer of LA’s Minority AIDS Project (MAP), one of the nation’s largest people of color ASOs. “We’ve never had the million-dollar grants that APLA has. We don’t have full-time development people to get the grants in.” These days, MAP’s private funding is down 40 percent, and the group has cut back many of its adult day programs and support services and closed the anonymous-testing site it ran in South Central Los Angeles.

The more difficult funding climate shouldn’t stop donors from examining how AIDS organizations use their money, says ACT UP/Golden Gate’s Don Narbone. Earlier this year, he and San Francisco gadfly Michael Petrelis initiated the AIDS Service Provider Accountability Project (ASPAP) for that very purpose. One of their pet peeves is the high salaries—some in the six figures—of ASO executive directors. (For example, Pat Christen, executive director of the San Francisco AIDS Foundation, drew almost $165,000 this year.) But philanthropy experts say those salaries aren’t out of line with those of other nonprofit health groups. And in presenting his accusations about “misused funds” at a Washington, DC, press conference last summer, Petrelis was joined by Oklahoma Rep. Tom Coburn (R), who has offered some of most regressive HIV legislation in Congress. All this has left Petrelis and his project with a bit of a credibility problem. Still, the group’s website ( is a useful resource, providing IRS filings from more than 30 ASOs across the country. “This organization,” says Narbone, “was founded to make sure people’s donations went where they were supposed to go.”

The kind of careful scrutiny ASPAP recommends could have gone a long way in Florida, where AIDS fundraising has plummeted as a result of recent scandals, says Stephen Fallon, director of education at CenterONE, a Fort Lauderdale ASO with 4,500 clients. In one, a man started a major raffle for something he called the National Foundation for AIDS Research and pocketed almost all of the substantial proceeds. The other involved dismal returns, two years in a row, from the much-advertised Florida AIDS Ride.

Still, recent news from the AIDS fundraising field isn’t all bad. Billionaire financier George Soros has given $2 million to needle-exchange groups in the past two years, the second million tied to a matching-grant program. (Federal funding for this proven transmission-reduction strategy comes to exactly zero.)

With the epidemic coming of age at 18, some ASOs have realized there may be more efficient ways to manage their resources. In Wisconsin, southern Arizona and Indiana, organizations that once complemented or even duplicated each others’ services have merged. That’s a move foundations encourage in a world of limited finances. In Wisconsin, four private ASOs and four local public health departments’ AIDS programs combined this January under the auspices of the AIDS Resource Center (ARC) of Wisconsin. “We don’t have eight executive directors anymore,” says Doug Nelson, the group’s one and only ED. “We don’t have eight finance directors or eight development directors.” ARC Wisconsin says it has centralized administration without eliminating services.  

These days, fundraisers are leaving behind a crisis mentality to engage in long-range planning that can help sustain giving in the years to come. “We’re trying to learn about how and why people give, and structuring our work around that,” says Lee Heck, director of development for Seattle’s Northwest AIDS Foundation. Heck points out that some of ASOs’ most important work—controversial prevention campaigns, covering shortfalls in the government’s AIDS Drug Assistance Program, providing housing and meals for people in need—couldn’t exist without that 20 percent to 50 percent of operating expenses that come from private giving, whether from major donors or individual AIDS walkers who contribute $25 a year. “Our government grants are earmarked and don’t pay for advocacy work. So private funding is critical.”

Eighteen is a milestone year, one that signals a shift from childhood to maturity. If the needs created by an ever-expanding AIDS epidemic are to be met, a more adult kind of giving will be required of us. Gay people will need to renew their sometimes faltering commitment, even as the epidemic moves beyond its former center. And those people of color who’ve been hesitant to associate themselves with the disease, with its twin stigmas of homosexuality and injection drug use, will need to confront the problem they’ve tried so hard to avoid.

Eighteen. In Hebrew, the number means “life.”

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