By Ryan Yousefi
By Chuck Strouse
By Terrence McCoy
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By Michael E. Miller
By Kyle Munzenrieder
By Michael E. Miller
A small man with close-cropped hair sits behind a conference table at Mercy Hospital, clenching a pen and glowering. The room, located on the sixth floor and overlooking a glistening expanse of Biscayne Bay, is sprinkled with about twenty people, most of them infected with HIV, the virus that causes AIDS. "We are getting away from the consensus I am trying to get," he says with a scowl.
Gene Suarez, an activist for the People With AIDS Coalition, senses resistance. The issue is food vouchers. The largest of the half-dozen AIDS organizations that provide vouchers is allegedly favoring its own clients -- those who have registered with the agency and completed an extensive intake process -- over other infected people in the county. According to Suarez's group, Health Crisis Network is refusing to distribute the $35 certificates, redeemable for food at Winn Dixie supermarkets, to hungry AIDS patients who walk in the door for the first time or who are referred by other service providers.
Suarez is asking the AIDS community to censure Health Crisis Network. He wants PWAs (shorthand for people with AIDS) to demand equal treatment. Using classic Sixties-era protest rhetoric, he attempts to rally the dozen or so PWAs attending the March 14 meeting. Money-hungry providers are discriminating against powerless AIDS sufferers. The afflicted need to unite and fight back. It's as simple as that. But Suarez's exhortations are escaping other activists.
Joey Wynn, a vocal advocate for the rights of the HIV-infected, is uncomfortable with a flat-out condemnation of one of Dade's oldest and most highly regarded AIDS agencies. He appeals for dialogue. "Our purpose is to change this," he says earnestly. "We don't like this. We don't feel it's right. But if you want to get something from somebody, you have to meet them on equal terms and work it out."
"That's not true," Suarez interrupts, his voice tense with anger. "You can hurt their pocketbook. If you hurt their pocketbook, they will respond. That's what we gotta do. It's a business."
"It's only $15,000 in government funding," Wynn tries to reason with Suarez, pointing out that Health Crisis Network has a budget of well over two million dollars. "It's irrelevant."
Suarez ignores Wynn, repeating monotonously: "If you hurt their pocketbook...."
"If they lose [the food-voucher money] it's no big deal," Wynn continues, his common-sense argument sounding like a plea. "There is a proper way to change it."
"There are many ways to change it," Suarez snaps. "You can do it diplomatically or you can do it the militant way."
"I think you would make a bigger impact by speaking to HCN's board of directors," offers Barbara Gottlieb, herself a board member at another AIDS organization providing food vouchers. "They need to know what's going on."
Suarez flinches at her comment, and the tenor of discussion suddenly becomes deeply personal. "That's what you think because you're not a person with AIDS," he blurts out in exasperation. "You don't understand the urgency we have with some of these things.
"You are not a person with AIDS," he repeats, his voice rising. Everyone reacts at once, and the room erupts in turmoil. Gottlieb immediately retracts her suggestion. "I know," she says soothingly. "I agree with you. I agree with you."
"That has nothing to do with the issue," someone protests.
"It does. It does!" Suarez insists.
Technically, Suarez has a point. The PWA Consensus Committee, gathered that evening at Mercy Hospital, was formed by the Metro-Dade HIV Health Services Planning Council this past December in order to increase the participation of people living with AIDS and include their input in the council's decisions. Made up of representatives of provider organizations, AIDS sufferers, and community members, the council advises the Dade County Commission about allocating Ryan White Title One federal funds for the care and treatment of AIDS patients. (Ryan White was a teenage hemophiliac from Indiana whose struggle for acceptance after he contracted HIV through a blood transfusion brought the disease to national prominence.) This year those funds are expected to equal a little more than $19 million, about half of the total amount of federal money earmarked for local AIDS programs.
In spite of its bureaucratic moniker and unwieldy responsibilities, the Health Services Planning Council's actions have immediate repercussions on the lives of the estimated 34,000 county residents infected with HIV. Yet few have any idea of what it does.
As a member of the council and an activist with the People With AIDS Coalition (PWAC), Suarez has hammered at the issue of increased participation by AIDS victims, insisting that only people directly affected by the disease will care enough to make sure the millions of federal dollars are properly spent. PWAC itself functions as an unofficial watchdog, pointing out conflicts of interest, violations of Florida's Sunshine Law, and suspected fraud. The Coalition also sponsors its own support groups and offers an array of assistance, ranging from free haircuts to anonymous AIDS testing.
Strident and uncompromising, PWAC activists have become the bane of AIDS-related meetings. Within the white-washed walls of the organization's Biscayne Boulevard headquarters, however, their abrasive reputation is a source of pride. "Advocates don't make friends; advocates make allies," says J.D. Ramsay, volunteer editor of PWAC's monthly newsletter, which has developed notoriety for attacking providers it alleges have abused either their funding or their clients.