The Money Trail



The woman stood at the mike, her hands shaking but voice steady as she told her story. She had already begun treatment for HIV when her baby daughter tested positive for the virus. At a time when her life was slipping into chaos, she now had to leave the doctors near her Bushwick home. They weren’t funded for pediatric AIDS care, so she and her baby would have to travel to Manhattan for treatment.

“I find it ridiculous that I can’t get family services care,” she bellowedinto the mike. “We should not have to settle for the crumbs that fall from larger groups in Manhattan.”

Behind her, other people living with AIDS and AIDS advocates waited in a growing line to speak last month at a public hearing organized by a coalition of Brooklyn community groups. Residents of East New York, Flatbush, Brownsville, and other Brooklyn neighborhoods told their congressional representatives about the difficulty of finding AIDS services in their areas.

“You had a wonderful mix of federal government, corporate funding and private foundations, individual funding and Hollywood interest. That’s not there now that the epidemic is blacker, browner, younger, and female.”

Mostly, they told of traveling to Manhattan by subway or paying as much as $40 for a taxi ride—a choice often dictated by their health—to get medical care, groceries and meals, counseling, or other necessities to keep them going another week.

In terms of AIDS funding, community-based organizations (CBOs) have seen the best of times and the worst of times during the last few years.

AIDS funding from public sources has been growing since the early days of the epidemic. In 1999, the New York City Department of Health allocated $11 million to organizations doing prevention work; the state health department spent $147 million for AIDS programs and services. Meanwhile, last year, the city received $97 million in Ryan White CARE Act money for medical care and services for people with AIDS. Other federal funds pay to house people with AIDS and to prevent the disease.

But some activists see the great era of AIDS funding, especially from private sources, coming to an end just as the epidemic is hitting communities with fewer resources. Advocates also question whether public funding increases are keeping pace with the epidemic. For every $10 the federal government spent on AIDS in fiscal year 1999, only 80 cents went to prevention. And as the Brooklyn funding crunch shows, the existence of government funding does not guarantee that it will always reach needy communities.

“You had a wonderful mix of federal government, corporate funding and private foundations, individual funding and Hollywood interest,” says Philip Hilton, senior vice president of the National Black Leadership Commission on AIDS. “That’s not there now that the epidemic is blacker, browner, younger, and female.”

That’s why Brooklyn organizations are so alarmed. The borough has the largest number of blacks with AIDS in the city. Yet in 1998, the city defunded 16 Brooklyn groups and three hospitals that provided local AIDS services.

The coalition claims that Brooklyn’s funding dropped from $9 million in 1995 to about $7 million in 1998. And the groups that were not re-funded may not have another shot until the city opens the process again to new bidders, which won’t take place for several years.

This happened even though the planning group charged with deciding how the city spends much of its Ryan White funds wanted to assist groups serving needy communities. “The money is supposed to follow the cases, but that hasn’t been happening,” says Dee Bailey, coordinator of the Brooklyn United Community Coalition, made up of groups throughout the borough. “In Brooklyn, the AIDS cases are traveling to Manhattan.”

The dollar amounts may be less than what Manhattan received, but according to the city, Brooklyn got more than a third of borough-based contracts. “We felt it was important to give new agencies a chance to serve populations that they think it important to serve,” says Department of Health spokesperson Sandra Mullin. “That meant some agencies didn’t have the renewals of funding that they would have liked.”

CBOs have learned that securing AIDS funding, from governments and private foundations, isn’t just about how good the programs are, but how well they ask for money.

Brooklyn leaders acknowledge that some groups looked at the Ryan White application and realized that they didn’t have the resources to put together a winning bid. Others couldn’t compete with larger or older groups that have more grant-writing experience. “African American organizations didn’t have the wherewithal to get those dollars,” explains Tokes Osubu, network coordinator at the East New York/Brownsville HIV Care Network, which offers advice and assistance to AIDS organizations in the area. “Our agencies don’t have the capacity or the resources to devote to fundraising.”

In 1998, the Congressional Black Caucus secured $156 million in federal AIDS money for racial and ethnic minorities. This is just a start, say AIDS advocates, because the money, split nationwide among so many interests, including treatment, planning, and prevention, isn’t a lot.

But community groups will take any help they can get. Organizations doing fundraising have been essentially casting in a drying stream, as foundation contributions for AIDS continue to dwindle. Between 1997 and 1999, grants of $50,000 or more were down 22 percent, according to Funders Concerned About AIDS, a philanthropy advocacy group. Most foundations expect to decrease or hold steady their AIDS funding.

Interest in AIDS philanthropy has been on the wane as the public grows weary after 20 years of writing checks. Likewise, new therapies make people believe the crisis is over. “Even though we still have benefits and big-ticket fundraisers, it tends to be large institutions like Gay Men’s Health Crisis. Small minority organizations tend not to be able to pull that off,” says Paul A. Di Donato, the group’s executive director.

Now an unexpected source of revenue has answered the call—pharmaceutical companies. More of them find that funding local groups is a good way to get their brand names in the community. Bristol-Myers Squibb Immunology, for instance, is currently sponsoring an 18-week program called Test, Link, Care, which tests Harlem residents for HIV and counsels them either in prevention or treatment depending on the results.

These new business-community partnerships are not without controversy though. “Pharmaceutical companies sometimes want a particular message about the effectiveness of their drug, whereas the community group may not think that’s the message that they want to convey to the community,” explains Odell Mays, vice president of Community Access, a direct-to-patient education company that coordinated the effort in Harlem.

To fight AIDS in the black community, local groups will have to get a larger share of the remaining funding. “I don’t know if we are tapping into the nongovernment sources,” says Osubu. “Money is out there, but not many [CBOs] know how to tap into those dollars.”


Part I: Emergency Call by Kai Wright

How AIDS Is Hurting Black Communities

Part II: Black, Gay, At-Risk by Kai Wright

Homophobia, Racism, and Rejection Fuel Rising Infections

Part III: The Tuskegee Effect by Kemba Johnson

For Blacks, a 28-Year-Old Study Is One of Many Barriers to HIV Prevention

Part IV: Double Jeopardy by Kai Wright

In NY State Blacks Rank Highest Among HIV-Positive Inmates

Part V: Black Women and HIV by Sharon Lerner

Rising Infection Rate Reflects an Age-Old Gender Imbalance

Part VI: The Money Trail by Kemba Johnson

Dollars Don’t Always Follow New Trends in AIDS Cases