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The paper's headline read "Is it time for the AIDS Foundation to downsize?" The pull quote: "We've created a monster." The quote comes from Tom Calvenese, a member of the Health Department's Ryan White HIV Health Services Planning Council, a 35-member body that oversees how AIDS dollars are spent in S.F. under federal authority.
"It's not just the SFAF," he told BAR reporter Cynthia Laird. "It's the whole AIDS service structure [that] is too big. It's corporatized to a degree that it's undermining its ability to serve PWAs [People With AIDS]." He added: "Ten years ago I fought the establishment, now I'm fighting the same battles except it's the AIDS structure."
Though their rhetoric is harsh, activists calling for a dramatic new funding regime recognize something important: The way AIDS dollars are spent will surely have to be adjusted if the new treatments prove themselves.
According to the AIDS Office's 1995-96 budget of $58 million, the latest figures available, the city spent $5.2 million dollars for ADAP. By contrast social services received $18 million.
For just $11 million of the social service monies -- a category that does not include substance abuse and mental health programs -- between 550 and 1,100 more people could have the new drugs and roll the dice on a future. Taking the entire S.F. AIDS social service budget and pouring it into drugs would give 900 to 1,800 a chance at the new treatments.
And consider: The bulk of many nonprofit budgets is made up of donations from private foundations and corporations. And as the pandemic shifts, some foundations are allowing nonprofits to spend their money any way they wish, a policy that will only increase the pressure to spend more on drugs.
But make that argument to Tiffany Mock-Goeman, the director of Catholic Charities' HIV services division, the largest housing provider for people with AIDS in the Western United States, and she will tell you a story about a woman staying in one of the group's S.F. homes.
We'll call her Sally. Sally is a crack addict who dabbles in other hard drugs and is mentally ill. She started on protease inhibitors this summer and failed to even make a small effort at complying with the regimen. She was smoking rock and, quite frankly, going crazy. And this was a woman who had a structured environment, where social workers monitored her medication and made sure she had the nutritional regimen required by the type of protease inhibitor she was taking. "She was crushed," Mock-Goeman says. "She realized she wasn't going to get better."
Mock-Goeman and others argue that taking away money from social services, while helping people get treatments, conveniently forgets the other needs imposed by the pandemic.
"I want these drugs to be everything that they are hyped to be," Pat Christen says, sitting in her United Nations Plaza offices. "But under the best circumstances there are those for whom they don't work. It's just so very cruel to say, 'Scrap everything and we are going to put it into protease inhibitors and, sorry, this train has already left the station,' " she adds.
Joey's physician's assistant, Laura Strauss, speaks more freely. Unlike Christen, she doesn't have a political constituency to tend to. Her more than 100 clients on Ward 86 at San Francisco General Hospital are the underclass, the homeless, the mentally ill, the drug-addicted. No one can call her a fat cat or complain about her salary.
"You want to know what I think about that point of view [the one advocated by ACT UP]?" she asks, her eyes narrowing and taking on a hard glare. "It's elitist, selfish, and narrow-minded," she blurts as if the words were all one.
It's late on a Wednesday afternoon on Ward 86. The sun pours in through the window, casting shadows on Joey's face as he sits on the exam table.
Strauss shuffles through his papers, reminding herself of the particulars of Joey's case. "You're not very good at taking care of yourself are you?" she scolds.
Joey stammers, "I'm good."
"Your last visit was in October and before that July. You like to skip a few months," Strauss says, riffling the sheaf of pages again.
Joey is disappointed today. He started Crixivan two days ago and has had nothing but trouble: nausea, diarrhea, and headaches. So he stopped taking the drug.
"I was doing it wrong," he says. "I didn't know you had to drink a lot of liquids with it."
Strauss peppers Joey with questions. How much are you smoking? How are you emotionally? Have you lost or gained weight? How bad is your nausea and diarrhea? Do you want to take another protease inhibitor?
"No, I will give this one a shot and I promise to adhere to all the policies," Joey says.
Joey's daily regimen looks like this: 11 to 13 pills a day. Two Crixivan pills three times a day on an empty stomach. One 3TC pill and one d4T pill a day. And a few anti-ulcer pills a day depending on need. Not bad, some AIDS patients have to take up to 40 pills a day.
In June 1995, the last time he had blood work done, Joey's viral load was at 42,000 (a middling amount of HIV), and his T-cell count was a troublingly low 299. "But that was up from nowhere," he says. As AIDS patients go he is doing OK. Not great. But not bad. He has no opportunistic infections.
But he has blood in his stool, he tells Strauss, and he has had abdominal pains for years.
She performs a rectal exam.
The next day, Joey calls an acquaintance.
"It's been a real bad night," he says in a shaky voice. "Laura thinks I have colon cancer."
