By Stephen Young
By Stephen Young
By Stephen Young
By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
Because the Food and Drug Administration had humanely fast-tracked its approval (under pressure from AIDS activists), not much was known about the medications' side effects, and what was known was downplayed. Nausea, vomiting and intractable diarrhea made life with cocktails (also known as highly active antiretroviral therapy, or HAART) as unpredictable as it was unpleasant. Killer opportunistic infections such as Kaposi's sarcoma and pneumocystis carinii pneumonia (PCP) seemed a tragic footnote in AIDS' brief history, but with cocktails came freaky tales of fat redistribution and increased risks for diabetes and heart attack as well as renal and pancreatic damage.
Assisted by steroids, cosmetic surgery and renewed determination, patients often kept these toxic side effects from public view. What was seen instead were positives returning to work, getting off of disability and managing just fine. In controversial ads, drug companies portrayed positive men climbing mountains, riding bikes and engaging in romantic liaisons--just like everyday queer folk. But it wasn't just the drug companies that depicted the life of an HIV-positive as nothing out of the ordinary. An entire culture of AIDS service agencies grew up around the epidemic, dedicated to bringing normalcy to economically disadvantaged positives by providing them with food, clothing, counseling, housing, transportation and medical care. Not only had the disease galvanized the gay community like never before, it began to whittle away at old homophobic hatreds. While some heterosexuals continued to stigmatize and discriminate, others became more accepting of gays, their rights and their relationships. "The victimization of gay men by a disease paradoxically undercut their victimization by a culture," wrote Sullivan in his Times article. "There was no need to kick them, when they were already down."
A new mythology grew up around the disease and its new drugs, one that bred complacency as well as denial. Because the next generation of gay men didn't know many people who had died from AIDS, their fear of the disease seemed diminished. "There is a false complacency that comes from seeing your friends on meds and they are doing well," says Melissa Grove, the executive director of the Legacy Counseling Center, the largest provider of HIV counseling services in Dallas. "And you start to think, 'Hey, if I get the disease, it wouldn't be the worst thing.'" If getting AIDS was as normal as depicted, why even worry about safe sex, especially when you could pop a few pills and feel fine?
Other men, gay and straight, tired of safe-sex messages and found rationales to swear off condoms: a need for intimacy, a fear of rejection, a sense of invincibility. Certainly for some in the gay community, there was a push toward monogamy, but for others, illicit drugs, the Internet and a willful blindness about transmission all conspired to justify a return to the promiscuity of the past, where anonymous and casual sex were no big deal. And denial ran deep in minority communities where the stigma from the disease was as daunting as the disease itself. (That stigma is still enough of a concern that all the HIV-positive individuals interviewed in this article except one agreed to participate only if given pseudonyms.)
By 2002, the numbers began to tell a different story: For the first time in a decade, the number of AIDS cases rose in the United States. From 2001 to 2002, new HIV infections among gay and bisexual men in the 25 states with long-standing HIV reporting procedures increased by 7.1 percent. More than 50 percent of all new AIDS cases were in the African-American community, and more than 64 percent of women with AIDS were black. Based on findings released in September by Dallas County Health and Human Services, new HIV infections have grown steadily since 1999 in Dallas County, which now records the greatest number of new cases in the state. Some epidemiologists believe it's too soon to tell if the disease is resurgent, while many speak with growing alarm that the plague is staging a comeback.
And yet no pristine epidemiological category--men having sex with men, IV drug users, women of color, heterosexual men--can capture the anguish and the actuality of the disease. Life with cocktails is messy and rigid and irrational and tragic. It saps the spirit and the bank account and magnifies the stress of everyday living exponentially. And it can best be told not through cold numbers, but rather through the lives of the people who live it.
There is a brief window in the morning when he feels good--good about himself, good about his health, good about not dying. It only lasts a few minutes, until he starts taking his medications. That's when Neal Shaffer begins swallowing his 19-pill cocktail, a combination of protease inhibitors (PIs), nucleoside analogues (nukes), non-nucleosides (non-nukes)--the three classes of antiretroviral drugs, which attack the virus' ability to reproduce.
Some doses are taken in the morning, others in the evening, some before meals or after. His nausea, headaches and vomiting arrive early or not at all. It's the not knowing that's the worst, not being able to anticipate whatever side effects his regimen might bring. "It's what keeps me from getting a real job," he says. "Sometimes the best I can do is to get back into bed."