A few weeks ago, Joey said he wasn't going to take the new treatments, which center on new anti-virals called protease inhibitors. By implication, he was saying he had resigned himself to an early death.
It may seem strange for someone with AIDS to falter on the borderline of hope. (The new drugs have so lowered the viral load in some patients that it's no longer detectable.) But Joey, and other people with AIDS, has plenty of reasons to be unsure.
First there's the toxicity. Many people can't handle the new treatments. "I'd rather not take it and have my life shortened than deal with all the discomfort," Joey says after he hears that some patients are confined to bed by the nausea and diarrhea that attend protease inhibitor regimens. And for reasons that are still unclear, the drugs simply don't work for some. Finally, there's the cost, an astronomical $10,000 to $20,000 a year. Though not a problem for Joey, who's covered by Medi-Cal, it is for many.
But less than a week later, Joey and the physician's assistant who oversees his case at San Francisco General Hospital's Ward 86, one of S.F.'s clinical epicenters of the pandemic, agree that he should try Crixivan, a protease inhibitor, and two other anti-viral drugs, 3TC and d4T. "I've done a lot of soul-searching, and I'm going to do it," he says.
Now that Joey has unmoored himself from the certainty of death, he has to deal with something nearly as terrifying: an ambiguous future.
"I'm tired of being a guinea pig," he says.
If the new treatments fail him, Joey will be back to square one: poor (he makes less than $11,000 a year) and facing an expensive and deadly disease. Worse yet, the virus in his body will have developed immunity to protease inhibitors, making it less likely that any of the many promising drugs in the pipeline will be able to have an effect.
If that proves to be the case, Joey will have to rely on the array of social services for people with AIDS that he's availed himself of since he started to turn his life around in 1987, after learning he was HIV-positive. He will need housing first, and finally a hospice bed in which to die with dignity. He will need help with food programs and other necessities. And counseling for the depression that creeps into his life now and then.
But protease inhibitors have done more than introduce the troubling concept of a future into Joey's life; the arrival of the treatments has eroded support for the very services he will be dependent on if the drugs don't work. Strangely, AIDS-specific social services have become a new target in the war against AIDS, with some activists arguing that they drain away money that should go for buying the new drugs.
So it's pretty obvious why the future is a riddle for Joey; why, like some, he isn't ready to jump for joy and announce the end of the AIDS crisis. Hope so thoroughly attenuated is really no hope at all.
The new drug therapy has had a profound effect on the pandemic. On a purely conceptual level, it puts thinking about AIDS in disarray. Is this the beginning of the end, or merely the end of the beginning? In hospitals and clinics, doctors are struggling to reimagine practices that have been defined for so long by the assumption of death.
But the most fractious changes brought on by protease inhibitors, at least in S.F., have taken place in the realm of AIDS politics, where a branch of activists has turned against the very service providers they once fought for.
On one side of the divide stand treatment advocates. They believe the nonprofit agencies that provide social services like housing and food banks to people with AIDS have grown fat and lazy and unresponsive to the new needs, specifically access to protease inhibitors.
"We are just warehousing people," says Jeff Getty of ACT UP Golden Gate. "It's time for the warehouses to start dispensing medicine."
How soon and to what degree? The answers can get wobbly from the spin put on them by the more-money-for-drugs crowd.
First, Getty says services and drugs are both important. But, when money grows tight, which he believes it will, he says drugs should be the priority. "If there isn't enough money, we will have to scale back on services to make sure that the drugs are paid for," Getty says.
He adds, "This is a disease first and foremost. We shouldn't be creating a welfare system in the name of HIV. I wonder what's next? HIV-positive food stamps?" (Getty's position is colored by his own struggle with AIDS. After his world-famous baboon bone marrow transplant last year, he went on protease inhibitors and his viral load doubled -- a sign of failure -- so he gave up. His political position is formed around the notion that more and better drugs are coming.)
If Getty is cagey, others are more blunt. As Jerry Joshua de Jong, former executive director of 18th Street Services, a nonprofit AIDS service agency, writes in the Jan. 9 issue of the Bay Area Reporter, "It is time to make these [new] drugs available, and the only way to do that nationwide is to dismantle the AIDS service industry."
De Jong's opinions carry weight. He has also served as an AIDS Office staffer and was a founder of the Tenderloin AIDSNetwork.
Most service providers plead patience, arguing that the long-term efficacy of the new treatments remains to be seen, that no major restructuring of the AIDS bureaucracy should take place until all the facts are in.
"There are 3,000 people with AIDS on a waiting list for housing in San Francisco, but there is no one on the waiting list for protease inhibitors," says Laura Thomas, a former ACT UP San Francisco member who now serves on the HIV Health Services Planning Council for the city's Health Department and works as a policy analyst for the San Francisco AIDS Foundation. (Some states don't pay for protease inhibitors. Still more have lotteries where the drugs are doled out in a macabre crapshoot. But S.F. officials have pledged to pay for as many new AIDS treatments as needed.)
In S.F., the conflict has grown nasty. AIDS activists have begun cannibalizing their own. Thomas' boss, Pat Christen, the executive director of the S.F. AIDS Foundation, has been singled out for a vitriolic sticker campaign, the sort of attack once reserved for right-wing bigots and homophobic cops.
Stickers placed all over town picture Christen as a feline, whiskers and all. "Dump Fat Cat Pat," they read, while announcing her $131,000 annual salary. (The anti-Christen campaign originated with a union dispute at the foundation, but has been adopted by certain advocates of the money-for-drugs side of the debate.)
Not surprisingly for a fight over money, the dispute is complicated by race and class. Many of those arguing for new funding priorities are economically secure, white gay men. Like Getty. And the programs they are attacking serve an extremely poor, sometimes homeless, often drug-addicted population, made up in the main of African-Americans and other minorities. If they prevail, it will ultimately be easier for the indigent to receive drugs. But at what cost?
Also, it's probably no coincidence that the waning support for social services comes at a time when AIDS rates for gay men are declining (though they still make up the greatest number of cases) and the rates for women, heterosexuals, and IV-drug users are increasing. For example, between 1986 and 1996 S.F. AIDS cases among women rose from 16 to 61. For heterosexuals, cases rose from 6 to 19 over the same time. And heterosexual IV-drug users went from 20 to a startling 127 cases. Meanwhile, AIDS cases among gay and bisexual men dropped from 1,679 to 688.
As the pandemic continues this shift away from gay men who can afford the new treatments, and as AIDS promises to become for them a chronic condition rather than a fatal disease, what's occurring is nothing less than a fracturing of S.F.'s AIDS coalition, in its best moments the uniting of straight and gay, white and people of color, toward a common and urgent purpose. Born in San Francisco, it now may die here, too.
As the fight over AIDS dollars escalates, a sobering truth will emerge: With the advent of new treatments, the fight is no longer against one pandemic, but two.
Joey straddles both pandemics, the one containing hope, and the other offering only temporary comfort. No wonder the future so perplexes him.
More than most, his story illustrates the need to keep faith with the old methods of caring for those who will not make it out the other end of the disease. Indeed, Joey is a living argument for protecting AIDS-related social services, which kept him alive long enough to try the new drugs.
Ten years ago, Joey hit bottom, without a friend or family member in the world to help him. Step by step, he used nonprofit agencies, like rungs in a ladder, to climb back to where he is today: with a roof over his head, a job, and, most important, the wherewithal to take the drugs that could, just maybe, save his life.
Joey very clearly remembers when things started to go wrong for him. He was about 7 years old, sitting on the couch with his mother and her new boyfriend watching TV in their Albany, N.Y., home. The boyfriend told him to go to bed. It was the guy's first night over at the house, and he was a total unknown to Joey. For him to be giving orders, with no intervention from Joey's mother, rocked Joey's world.
The relationship between the young boy and the boyfriend, who would later become his stepfather, deteriorated from there. Growing up as an effeminate gay teen-ager made things all the more difficult.
At the age of 14, fed up with his stepfather, and after torturing his parents with drug abuse and petty crimes, Joey flew into a fit of rage and broke the front window of his stepfather's carpet store. Thinking he was teaching Joey a lesson, the man pressed charges. Joey was sentenced to one year in the Albany County Jail. There three correctional officers raped him. Though the guards were convicted of the crime, Joey says his parents' concern during the crisis was merely for the family name.
After the ordeal was over, Joey left home and never looked back. Starting as a dancer in seedy gay strip joints in Times Square, NYC, turning tricks to survive, and mainlining speed, he ended up in S.F. by the mid-'70s. He danced at the Spartan Theater, hooking all the while. But he never stayed in one place long. "Part of it was a sense of adventure and part of it was running," he says. He spent time in so many places he can't remember them all today.
Back in S.F., he met Julio, a wealthy, married real estate investor from Spain. It was a unique relationship. After having sex once, Joey and Julio never did again. But they began living together in the Castro. Julio's sex life with men didn't extend beyond cruising Polk Street and bringing home male prostitutes. Every Tuesday night, Joey, Julio, and Julio's wife -- who lived elsewhere -- would have dinner together.
During most of the '80s, Joey was in and out of prison. He was arrested for auto theft in 1983. Let out in 1984, he kept violating parole because of his drug habit, and the state kept sending him back to prison. When he was free, Joey would work at various jobs, and from Friday night through Sunday night embark on sleepless, drug-fueled nightclub runs. By then, he knew in his heart he was HIV-positive. But he was too afraid to get tested.
When Julio died of AIDS in 1986, Julio's wife had Joey evicted from the house he and Julio had shared. "She showed up with some lawyers and a 30-day notice," he says. "And I had decorated that place."
Joey was yanked from the closest thing he'd had to a stable life. "All my friends were Julio's friends," he says. "I had no home. Only memories. I was scared. I knew I had it [HIV], and I didn't want to test. I was denying it."
Joey did one more parole-violation stint in 1987 and was released that year. He also finally got tested, which confirmed what he'd known to be true for years: He was infected with the human immunodeficiency virus.
Joey was at rock bottom, an ex-con with HIV and nowhere to live. "You go through a lot when you learn you are positive," Joey says, sipping a coffee at the Pendragon Cafe at Gough and Hayes. "You think, 'My life is over.' Then there's the fear of what's coming."
With no tethers to San Francisco -- only bad memories -- Joey left for San Diego. His parole officer there referred him to the AIDS Assistance Fund, and for the first time he got hooked up with a nonprofit service provider for people with AIDS. The Assistance Fund referred Joey to a nonprofit housing program, Truax House, where he gave up a portion of his welfare check for rent and Truax House made up the difference. After six months he became the night manager. "By being around other people with AIDS and volunteering I learned it was necessary to keep a positive attitude," he says.
Truax House overlooked the San Diego airport. Every morning at sunrise Joey would take the newspaper and a cup of coffee out on the balcony and watch the planes stack up and circle the field. In these moments, he says, he found a peace he had rarely known. "That was my therapy," he says.
In 1990, Joey was diagnosed with AIDS. His life was falling together, but his body had begun to fall apart. He came down with AIDS wasting syndrome and dropped from 265 pounds to 127 pounds.
At first, Joey was denied Supplemental Security Income (SSI). But he reapplied successfully with help from a pro bono legal assistance firm in the San Fernando Valley that helps homeless people with AIDS.
Though he had stopped shooting crystal meth, he still needed to deal with the recurrent cravings and emotional turbulence that had always led him back to the needle. He moved to Los Angeles and checked into a residential treatment center called Our House, which specializes in people with AIDS.
After four months, Joey moved to the Antelope Valley town of Little Rock with some people he had met in L.A. He wanted to get away from big-city temptations. He reunited with a son, the product of a short-lived teen marriage, he'd allowed to drift away in the 1970s.
Living on a 12-acre ranch, he learned to replace the tubes on big-screen television sets from an elderly man he had moved in with. He spent his days playing with the dozen or so dogs that lived on the ranch, recovering from wasting syndrome, and establishing a relationship with his son.
But in 1994, bad luck, as is its wont with Joey, intervened.
One of the people he was living with sold his porn film distributorship to a man in San Francisco. Joey and his friend agreed to teach the new owner the ropes of selling skin flicks at flea markets and corner stores. Riding around in a car lent by the new owner, Joey was stopped by the Oakland Police. The car was stolen, and Joey was found guilty of auto theft a second time. He was sentenced to two years in San Quentin.
Released on parole in 1995, Joey started skidding toward his old habits. He struck up a relationship with a heroin addict and moved into a warehouse space in West Oakland. In May 1996, he was mugged. The beating served as one more wake-up call for Joey. He left the junkie and moved to San Francisco in June.
In July of last year, he stopped in at S.F. General's Ward 86, the health provider of last resort for indigent people with AIDS. He was in tears, lost and alone, and suffering from a gash in the side of his head from the mugging. He met Laura Strauss, a fast-talking, no-nonsense physician's assistant. She started him on a regimen of d4T and 3TC.
Without a place to go, he turned to the San Francisco AIDS Foundation, which found him housing. "I had nowhere else to stay," he says. "What was I supposed to do, live in a shelter?"
One Wednesday last summer, he went to the Tenderloin AIDS Resource Center (TARC) to meet someone from Volunteers of America who helps parolees find the services they need.
There he also met Brenda Goldhammer, a case manager from TARC who set him up in more permanent housing at another hotel in Hayes Valley, where he moved last August. Goldhammer also referred Joey to mental health counselors and a program that delivers a nutritional supplement to his house to forestall AIDS wasting syndrome.
In addition, Joey has a case manager at Shanti House, a social service and hospice program, who has helped him obtain furniture for his hotel room and provided him with discounts at local art classes. "They provided me with a social life," he says. And an AIDS Foundation counselor is helping him figure out his finances.
Late last month, TARC hired Joey as its receptionist and he and Goldhammer went looking for a house in Berkeley to rent together. The same week, Joey decided to give Crixivan a try.
Joey's new job at TARC has provided him with more than a paycheck. But one thing the shoestring nonprofit can't provide is health insurance. The organization's plan contains more co-payments than Joey can afford.
So, like half of the people with AIDS in California, Joey has his health care paid through Medi-Cal. And that includes his Crixivan protocol.
Funding drug treatments for people like Joey is no small matter in San Francisco -- still with the highest infection rate in the nation. According to the 1996 annual report from the S.F. Health Department's AIDS Office, at least 50 percent of the 3,400 people diagnosed with AIDS in 1994 and 1995 have no private insurance. Five-and-a-half percent are homeless. (Currently, 7,346 people in San Francisco are living with AIDS, according to the 1996 report.)
The uninsured have two ways to pay for the new treatments, Medi-Cal, federal money spent by the states, and the AIDS Drug Assistance Program (ADAP), a federal program administered by counties for people who don't qualify for Medi-Cal. But Medi-Cal cuts in the budget President Clinton proposed this month and a plan by Gov. Wilson to redistribute ADAP in the state threaten those programs at the same time that demand is increasing dramatically.
The stress on ADAP funds was brought into stark relief last year when the city ran out of the drug money early. Heading into fiscal year 1997, the city faced a $5 million ADAP shortfall. Rep. Nancy Pelosi (D-S.F.) saved the day by wringing $100 million more out of Washington for ADAP budgets nationwide.
But now that that problem has been averted, another has cropped up. Gov. Wilson wants to take away $12.9 million from the nine counties hardest hit by AIDS -- S.F. is one of them -- and spend that money where he pleases. That would mean a $3 million cut in the city's AIDS budget.
At the same time, general AIDS dollars are also shrinking compared to previous years. Last fiscal year, President Clinton granted a 31 percent increase in AIDS funding. This year, he has proposed only a 3 percent increase. This comes at a time when the nation is still experiencing 40,000 new HIV infections each year.
With the arrival of protease inhibitor-based treatments, the demand for ADAP money has increased, placing an entirely new stress on the budget. Two thousand people in San Francisco are on ADAP-funded drug protocols, a dramatic increase since the arrival of protease inhibitors last year. Meanwhile, the demand for services -- typified by those 3,000 people with AIDS on a housing waiting list -- has kept pace. This two-way pressure makes the debate over how money is spent all the more fierce.
But S.F.'s top AIDS doctor, Mitch Katz, director of the Health Department's AIDS office, isn't worried. "I view it as a healthy dialectic," he said in an interview. "This is how we resolve issues. I don't think this debate has hurt anyone or been particularly destructive."
Katz says that everyone in S.F. who seeks the new triple-combo treatments will be granted them -- regardless of ability to pay. "Anyone who has a prescription for a treatment will get drugs," he says. However, if money grows too tight, prioritizing drugs means "it's possible that some [AIDS] service cuts will occur.
"In an ideal world," Katz says, "the drugs will prove as successful as we think, the price will drop as it usually does, and the level of institutional care will drop, and we will use the money to pay for treatments." But if just one piece of Katz's "ideal" picture fails to jell -- and more than one probably will -- the abstract debate over funding priorities stands a good chance of becoming a full-blown civil war.
In fact, the Battle of Fort Sumter of the AIDS civil war -- the first shots fired in anger -- may well have occurred last year when Pelosi won the $100 million ADAP supplement. When service providers -- Pat Christen included -- heard the new money would be spent exclusively on drugs, they lobbied Pelosi to split the appropriation evenly between drugs and services.
When the 50/50 deal was made public, all hell broke loose. At the most extreme, charges flew that greedy service providers were stealing lifesaving drugs from the dying in order to pay their salaries. Though that overstates the case, the service providers erred by acting arrogant and entrenched.
Their arguments that services must be maintained for those who won't benefit from the new treatments has merit. But the pandemic is changing. By grabbing $50 million from drug money at the very time the treatments were showing such success, they showed a myopic insistence in sticking with the AIDS strategies of the past -- when effective new drugs were part of the equation.
AIDS Foundation head Pat Christen's salary is $131,000 a year. And that drives some AIDS activists crazy. "That is just so far over the line," says Matt Sharp of ACT UP Golden Gate, noting that his annual pay is $22,000 as head of a discount buyers club for AIDS drugs called Healing Alternatives.
The AIDS Foundation's budget, in excess of $15 million a year, drives them just as batty. "AIDS Inc.," many activists call it. And they want it downsized. The city's oldest and most prominent gay newspaper, the Bay Area Reporter, has joined the crusade. On the cover of its Jan. 2 issue it ran a copy of the "Fat Cat Pat" sticker, this one with a legend reading: "AIDSPHOBIC, UNION-BUSTING, SFAF EXEC GETS SIX-FIGURE SALARY."
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."
The line goes silent. Then:
"I'm beginning to think," he says, steadying himself with a chuckle, "what's next?"
What's next is that Joey is going to be needing a lot more help than can be found inside a pill bottle. Joey's going to be keeping a small corner of the AIDS social service structure very busy. With any hope, for a long time.
Joey Richardson is a pseudonym for a San Francisco man living with
