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The AIDS epidemic is over. As long as you don’t look too hard.
Photographs by Darrow Montgomery
AIDS came back to our house late last year, but only for an hour or so. My boyfriend of 10 years, Brian, was at home and got a message from his doctor, Richard Elion, who said that he was in California on vacation but needed to talk to him. “Page me,” Elion insisted.
He hadn’t done that before, not in seven years.
So Brian paged the doctor, and then he called me. I was at work. We knew something was up because the lab results were due back. Brian had had blood drawn the week before, right after finishing four depleting months away from home during his first semester in business school. The same thing ran through both our minds: The wonder drugs aren’t working. The T-cells are probably down. The viral load is probably up.
I drove home frantically in the dark. It seemed as if all the blood had drained from my skull. Shit! It’s all coming back!
AIDS was coming back, four years after it left. The academic torture of Brian’s first semester had been made no easier by homesickness and general alienation. He had come home to relax in Decemberand to get his lab work done. He was dreading bad results. Bad results would suggest we’d made bad decisions. Bad results would fuck up his plans for school.
When I got home, I flew up the stairs and heard Brian on the phone talking with Elion before I opened the door. I walked in. My heart was pounding. The walls were shouting that huge white noise you hear when you’re with somebody who’s on the phone getting weird news.
Brian kind of laughed. “Oh-h-h-kay, Rick. Enjoy the golf….So long.” He hung up and looked at me.
“Cholesterol,” he said.
“Cholesterol?” I repeated.
Yup, he said. It was way high, near 300 or something, owing to one or more of the many pills and powders known as protease inhibitors that he’s been taking since 1996 to fight HIV: Crixivan, Viracept, Norvir, Invirase. Brian had responded to the drugs at once. They’d lowered the number of virus particles in his blood to next to nothing. They’d also restored his count of immune cells, whose numbers had gradually shrunk since he was first diagnosed with HIV, in December 1989. Their arrival had been very good news.
The relief that the protease drugs provided was a far cry from the early years, the years after the two of us hooked up, in 1990, when everything on the AIDS front looked bleak. At that time, there was the antiviral drug AZT, and later, there were ddI and ddC, but they had worn out their welcome with a lot of folks, Brian included: Those drugs had propped up his immune system for only a short time until he developed resistance. People we knew were sick and sicker, or dead. But we tried hard to look busy: We did the AIDSWalk. We licked envelopes at the Whitman-Walker Clinic. Brian did the AIDSRide (I carried the water) and raised $7,000.
But Brian felt stuck in life. He liked his employer’s insurance plan better than he did his job. Standing still had gotten him nowhere. In the winter of 1996, six months before he began taking the protease inhibitors, his vital lab numbers looked worse than ever. He had had few outward symptoms of HIV infection, though he had spent plenty of nights with a wretched stomach or numb feet because of the antiretroviral drugs he’d taken.
Once he began protease treatment, in June 1996, it was as if we were coming out of the basement after a tornado warning. The rain stopped. The wind died down. The sirens faded.
We felt like normal people for a change. And like most normal people in this country, we were happy not having to think very much about AIDS. Most of our friends who had gotten sick before the advent of the protease inhibitors had died. (One day, we got home and found a videotape of our pal Charlie’s funeral in the mail.) We got used to good lab results. Brian tolerated the drugs well. In 1998, he applied for and was accepted to graduate school. He quit his job, borrowed 70 grand or so, and moved south for two years. He was 33 then; he’s 35 now.
On the night of the cholesterol scare, Elion, having seen Brian practically through the valley of the shadow of death and back with HIV, said that he was afraid now that Brian would die of coronary disease in his mid-40s, before he ever suffered direct AIDS complications.
Oh, and the T-cell and viral-load results weren’t back yet, but the doctor would have them in a couple of weeks.
I must say, I forgot about AIDS for three years, even though it lived with us the entire time. The arrival of protease inhibitors in the midst of a pitiless epidemic had the effect of putting more than just the virus to sleep. The dying disappeared, the wounded stopped walking, and we gay, white, well-fed types who had helped to build a do-it-yourself infrastructure around the disease told ourselves that AIDS was over.
Conversations about AIDS changed completely. A friend of mine observed recently, regarding AIDS panic: “It’s gone from ‘Oh, you’re dying of AIDS. How tragic!’ to ‘Oh, you’re living with AIDS. How brave!’ to ‘Oh, you’re living with AIDS. How boring.’”
We used to talk about AIDS with existential terror, but today we talk about it as you do hypertension or diabetes: Do this, don’t do that, and you won’t die. It is said that the scientific community has transformed AIDS from a fatal scourge to a “manageable” illness. Thousands of people in this country started taking the protease drugs in 1996, and most of those whom we know got better and have stayed well. The epic scenario of AIDS seemed to recede overnight.
Well, almost overnight. For those of us buying success with the new drugs, it took a good while to tear down the capsule of dread we had come to occupy. It seemed more rational at first to keep one foot planted in the grim reality of the recent past, because to yield to an optimism that sooner or later might prove false would be delusional. Yet several greatly improved reports from the blood work Brian’s doctor regularly ordered led us gradually to yield to a qualified euphoria. Brian started on the treatment skeptically, but by and by he became less skeptical. It was like escaping a draft notice: Why, after all, should we argue with decent numbers?
Since it became clear that Brian was getting a reprieve from HIV disease, I can’t really remember our even talking about AIDS, except in the most perfunctory ways. We stiffen a little bit each time we go to Elion’s office on 20th Street NW to get lab results, but we always leave with little more than a few simple instructions. Perhaps you’ve heard a story like ours: We bought a house and we actually started saving cash for the first time rather than spending it as if there were no next year.
And as for those millions of people who could not afford $14,000 and up a year for the precious new drugs, or who did not respond to them? Well, I can tell you that I’ve been sitting here thinking not There but for the grace of God…, but something closer to That’s awful, but better them than us.
Nearly everywhere Brian and I have looked the past few years, we’ve found signs that AIDS is dying. Or, more precisely, in our comfortable universe, we’ve stopped finding signs that AIDS is killing. And we haven’t gone looking for them.
AIDS went underground in ways we could observe and in ways we could not. Statistics from the Centers for Disease Control and Prevention (CDC) in Atlanta revealed that during the first two years protease inhibitors were availablebetween 1996 and 1998AIDS deaths among gay men and bisexuals declined dramatically, although the drop was higher for whites (65 percent) than for blacks (53 percent). Here in D.C., the obituary pages of the Washington Blade suddenly began to contract, and the people in the obituaries were dying of old-fashioned causes, such as heart failure or emphysema, rather than “complications associated with AIDS.” A lot of folks who had lost friends to AIDS began to notice that they weren’t attending as many funerals as they had before.
It seemed as if most of an older generation of men whom AIDS had hit hard had moved on to the hereafter. And the survivorsthe weak, withered, cancer-scarred men who would walk with canes or ride in wheelchairs in the streets around Dupont Circle in the late ’80s and early ’90sseemed to have vanished, as well.
“You don’t see that anymore,” says Patricia Hawkins, a psychologist at Whitman-Walker. Hawkins began working full time at the clinic in 1989 after six years as a volunteer, and her handiness with depressing anecdotes and data affirms her reluctant authority as an AIDS veteran. “It’s not that they’re not there, because we see them,” she says. “But they’re not out and about, because they’re embarrassed about being sick.”
A new kind of stigma has attached itself to AIDS patients, especially among gay people. “Because everyone [else] is looking so buff and looking so healthy, it’s like, if you’re not responding well to the medications, then you’ve failed,” Hawkins observes. “There’s a different kind of stigma to being sick now, as opposed to being the heroes, which [AIDS patients] were in our community.
“And also,” Hawkins adds, “the healthy folks don’t want to be reminded that people are still sick. So there’s a kind of common myth that we are all better and that everybody’s OK and no one’s dying anymore.”
The flip side of fewer people dying of AIDS is more people living with AIDS. The District’s Administration for HIV/AIDS has not released local data since the end of 1998. But at that time, Wards 5 through 8, in the eastern half of the city, counted 4,825 people with AIDSexactly 1,000 more people than were counted in Wards 1 and 2, the ground zero of the epidemic here. Just as the protease drugs were taming the virus in the mostly white, mostly affluent blocks around Dupont and Logan Circles, AIDS was flourishing in the mostly black and largely poorer neighborhoods of Northeast and Southeast D.C., where, of course, it had been lurking all along.
In the AIDS economy, people like Brian and me provide portraits of relative entitlement. Our incomes are good, but we are not rich. And although AIDS is still killing, we are able to pay our agents at Blue Cross Blue Shield a small monthly ransom to keep it from harming us. The actual cost of Brian’s medical care amounts to about $16,000 per year, but insurance covers 99 percent of this sum, most of which pays for drugs. He gets a three-month supply of his various prescriptions for five bucks each.
In our position, it’s easy to feel sanguine about the drug companies and the extremely high prices they charge for their products. Some drug firms are, indeed, probably run by very nice people, as journalist Andrew Sullivan suggested a few weeks ago in a New York Times Magazine article. Sullivan, who says he takes 15,000 pills a year to treat HIV disease, loves the drug companies. In his article, he thanked them for extending our lives, giving us our hair back, and helping us stop draining resources from hospitals. And he promised not to be such an ingrate as to gripe about the insane amounts of money they make.
I figured his was a piece of stunt journalism, because it was too stupid to be parody. Sullivan, like Brian, is a lucky guy, not merely because he has insurance, as he noted parenthetically, but because he has a roof, big meals (or so he has told us), clothes, transportation, and, presumably, a working wristwatch to help him take his medicine precisely on schedule. (Patients who don’t hew to the timing could find themselves farming a resistant virus.) And he’s no doubt got a telephone to reach his doctor if something goes wrong.
Protease inhibitors work best when they’re part of a larger package of privileges. Even then, though, all the drug love in the world can’t hide the fact that these formidable substances come with formidable caveats. Of the HIV patients who know about the drugs, can get them, and can pay for them, an estimated 10 percent are unable to take advantage of them because they can’t generate or sustain a positive response to them or can’t tolerate their toxicity.
Certain serious side effects of protease inhibitors have only recently been coming to light, perhaps because the drugs were clinically tried and approved on an accelerated schedule before their commercial release. Brian and I took his doctor’s initial warning about cholesterol levels in stride, but only until we heard of men dropping dead of heart attacks in the subway or on their vacations in Provincetown because the new drug therapies had helped to clog their bloodstreams with fat. That’s just a recent protease bummer, by the way, and there are others: The drugs are now known to contribute to or cause bone disease, diabetes, and damage to the liver, kidneys, and pancreas.
So it’s one or two cheers for the drug companies. But not three. Expensive therapies did nothing, in the end, for my brother Stuart’s friend Ron Fox, a fun, garrulous guy who died rather quickly of lymphoma this year in San Francisco. Ron, who, like us, enjoyed all the usual benefits of a professional’s income, had been getting along fine on the protease drugs for a couple of years, having been HIV-positive since the early ’80s. But in January, he started having these headaches….His doctor switched drug regimens once and then again, and in April he died, two days after undergoing a brain biopsy. During the biopsy, the doctor found that, possibly because of the drugs Ron had taken, a latent form of lymphoma had fired up into a very large brain lesion within a matter of weeks, which his doctor considered an unusually short period of time.
If I believed that AIDS was dying, or otherwise forgot the epidemic, it was because I figured that I had received written permission to do so.
All I had to do was walk past a newsstand in December 1996, shortly after the protease inhibitorsthe wonder drugsbecame available, and read the magazine covers: “The Twilight of AIDS?” trumpeted the Nation. “A Solution for AIDS?” mused the Economist. And Newsweek pulled out the line that everyone had waited years to hear: “The End of AIDS?”
The question marks did not impress me nearly as much as the hype they barely equivocated. The question marks stood for all of the complex qualifications, disclaimers, and contraindications the drug companies and medical experts were issuing about the protease drugs from the moment of their release. But unless you actually sat down to read the long stories inside, you took home the powerful words “twilight,” “solution,” and “end.” Such language, immoderate in the context of medical journalism, is irresponsible in the context of AIDS. But fine print does not move magazines off the shelves.
The headlines in the major newspapers were hardly more nuanced. On June 14, 1996, the front page of the Wall Street Journal said, “New Drug ‘Cocktails’ Mark Exciting Turn in the War on AIDS.” The Washington Post came out two days later with “‘Eradication’ of HIV Seen as Possible” on Page 12. The headlines on these and many other daily stories helped to announce, to the casual reader, that science was outsmarting the epidemic once and for all.
“The public digested the information and assumed the correct thing by what they were told,” says Cornelius Baker, Whitman-Walker’s executive director. “The public is being blamed for believing that AIDS has a cure, and, quite frankly, it’s not about the public.”
Those 1996 stories also marked the beginning of a downward turn in the number of AIDS stories running in the big national newspapers. AEGIS (www.aegis.com), a prodigious Web site of AIDS information started by two nuns of the Order of St. Michael in San Juan Capistrano, Calif., posts a completist’s archive of AIDS journalism abstractsfrom daily papers, magazines, and medical literaturecompiled by the CDC’s Prevention News Update. The listings include practically every story even remotely concerning HIV or AIDS from the three major daily U.S. papers.
In 1990, the Washington Post had 224 stories listed; in 1996, the paper ran 258 stories, or 15 percent more than it did six years earlier. But in 1998, the story count had dropped by half, to 125. The story-count declines between 1996 and 1998 in the New York Times and the Wall Street Journal were comparable: down by 33 percent in the Times and 75 percent in the Journal.
The major media outlets cut back their AIDS coverage at the same time that the public was ceasing to view AIDS as a white man’s diseasealbeit a gay white man’s disease. Earlier this year, the big dailies and newsweeklies unleashed one of their occasional bonanzas of AIDS-in-Africa reportage as a run-up to the XIII International AIDS Conference in Durban, South Africa, in July. But on balance, stories like those help us less to care about Zimbabwe’s problems than to reinforce our sense of domestic security here in the wealthy West.
A few weeks ago, I went downtown to the Marriott on 12th Street NW for one of the Carl Vogel Center’s public forums on recent AIDS treatments. For as long as I can remember, the Vogel Center has been holding these one-evening seminars, conducted by two or more AIDS doctors (Brian’s doctor, Elion, is a frequent speaker), to digest for patients the latest findings in medical therapies. They are supremely informative. I hadn’t been to one in about four years, not since the time when AIDS was killing more people like Brian than it is today.
Just as I remembered from earlier meetings, there was a large buffet of fibrous food, and several dozen people sat at long tables in one of the hotel’s large banquet room with pencils and notepads in front of them. What had changed was the composition of the crowd: It was mostly black, with a few white guys here and there. That squared with the latest national epidemiological data: In 1998, according to the CDC, the rate of reported AIDS cases among blacks stood at 66.4 per 100,000 people, more than eight times the rate for whites.
Given that most of the people at the session seemed fairly new to their AIDS questions and that I had lost track of the jargon a few years back, I would say we were, in many ways, equally challenged in figuring out what the experts were telling us about phenotype- vs. genotype-resistance testing, the difference between structured treatment interruption and structured intermittent therapy, and the cardinal rules of adherence to prescribed therapies. Acronyms were of limited utility.
The audience’s questions were a little more down-to-earth. A middle-aged man named Cochise Robertson-El stood up to ask about treating pain in recovering addicts: “What about people who are IV drug users who come to care in the final stages of their disease, only to be told that they can’t be treated, lest they relapse? How do we cure their pain?” And then he added as he sat back down: “We often have the back seat of the bus because nobody wants to talk about this issue.”
Elion took the question. “Which is worse,” he responded, “the pain or the habit?”
Issues like that never came up in these meetings back when Brian and I were attending them, and they aren’t too common in well-to-do AIDS culturethe one that doesn’t include intravenous-drug users. But as AIDS has entrenched itself among poor populations, social workers lament, its web has only gotten more tangled, with substance abuse, mental illness, domestic unrest, sexual dishonesty, and bad old self-loathingall of which make the illness infinitely harder to treat.
It’s fairly common, says Anthony Marshall, the rather intense director of the Phoenix Center, the AIDS clinic at D.C. General Hospital, for a patient to walk in with a toothache only to find out heor, increasingly, shehas full-blown, or Stage III, AIDS. Of the 2,115 people with HIV who visited D.C. General between October 1999 and September 2000, 1,075 of themslightly more than halfhad reached the third stage of AIDS already.
Mary Roseboro found out by accident that she has AIDS about five years ago. But although she can get the protease drugs through Medicaid, she has not been writing paeans to drug firms, because she’s busy trying to stay sober. And she hasn’t quit her job in pursuit of a more liberating career, because she didn’t have a jobor a house, for that matterin the first place.
These days, Roseboro, who is 50, spends mornings at Whitman-Walker’s day treatment center. But in 1995, she says, she was living nights at National Airport, Union Station, and the Greyhound terminal, among other places, while drinking and panhandling during the day. A van of medics from Healthcare for the Homeless discovered that she was ill and sent her to Providence Hospital, where she was diagnosed with Pneumocystis carinii pneumonia, a common HIV-related infection, and with HIV disease.
When I sit down with Roseboro, she is wearing a vibrant gold sweater. Her face and voice are calm, and so is the autumn afternoon.
Turns out, she tells me, the man she was involved with at the time was positive, too. But she says she’s seen the last of him, because once she got better, she left the hospital and moved to Miriam’s House, a group home for women on Florida Avenue NW, and did her best to avoid him. Roseboro left most of her family behind in North Carolina, so she has lived at Miriam’s House for four years with other women who, like her, are HIV-positive and are trying not to drink any more.
Some of the women, like her, make it back to sobriety and stay there. Others, Roseboro says, leave the group home, either dead or alive, without coming close. “I have seen a lot of people come and go. People die,” she says. “There’s a few I keep in touch with, and they’re having a hard time staying clean. One calls me every day, and I tell her, ‘You’ve got to just stay with your treatment.’”
Roseboro herself will have been clean for five years in February, but she nearly gave up once, in April 1996. She was on her way to a relapse, going to get some beer, when she had a stroke and wound up back at Providence. She took the stroke as a sign from God, she says, and with her monthly Medicaid and Social Security Disability Insurance checks, she spends her days keeping her schedule of Crixivan and Combovir nailed down and planning her meals accordingly. She tries to set an example for the other women. Everybody at Miriam’s House, she says, knows that “Mary eats breakfast after 9:30. Mary eats lunch after 1:30. Mary eats dinner after 5:30.”
I went to an ACT-UP rally, of all things, on Capitol Hill a few weeks ago. It was the first such demonstration I can remember in the past five years. I thought that ACT-UP had died along with the AIDS menace a few years back.
ACT-UPor the AIDS Coalition to Unleash Powerbecame the most conspicuous group representing people with AIDS when it first formed in New York in 1987. Within a few years, it spawned more than 80 chapters worldwide, and its slogan, “Silence = Death” thoroughly penetrated the public consciousness. So did its street theater: Between 1988 and 1990, ACT-UP grabbed headlines with dramatic demonstrations, die-ins, and not-so-civil disobedience at the Food and Drug Administration headquarters, Montreal’s V International Conference on AIDS, the National Institutes of Health campus, the CDC, and St. Patrick’s Cathedral in Manhattan.
Protesters with ACT-UP first targeted Burroughs Wellcome (now Glaxo Wellcome) on Wall Street in 1987 to harangue the drug maker for its pricing of AZT, the first AIDS drug to win FDA approval, at $10,000 a year. The coalition then launched a long and quite effective campaign to get the federal government to speed up clinical trials of newly discovered AIDS drugs, which helped lead to the introduction of protease inhibitors.
The purpose of the recent ACT-UP rally, on the warm Friday afternoon of Oct. 13, was to protest presidential candidate George W. Bush’s ties to the pharmaceutical industry. About 500 people gathered in front of the whitewashed federal-style headquarters of the Republican National Committee (RNC) on 1st Street NEonce the late buses arrived. Most of the people were from out of town, because the D.C. chapter of ACT-UP did not mastermind this event; nor did the once-celebrated New York branch. The protest was organized by ACT-UP’s Philadelphia chapter.
The staging felt kind of like the old days of ACT-UP, but tamer. Several leader types led chants of “Medication for every nation!” and “Pills cost pennies. Greed costs lives!” across the crowd while the main organizer, Paul Davis, a skinny white guy with developing dreadlocks, ran around frantically, saying something about having to find his lawyers. His people, following right along with the script, were being arrested in the middle of 1st Street, where they lay next to black coffins filled with pill bottles, by members of the U.S. Capitol Police’s 30-member phalanx. (“Arrests Expected,” said the e-mail announcement of the rally.)
The salient difference between this ACT-UP resurrection and the demonstrations in the distant past was that, this time, the participants were largely African-American. At the apex of ACT-UP’s activity, around 1990, the group’s membership in the U.S. was, according to a survey by City University of New York doctoral candidate Gilbert Elbaz, three-quarters white, male, and college-educatedprivileged ranks of activists who knew how to push the buttons of power. Peter F. Cohen, an author and former ACT-UP member, refers to the old ACT-UP as a “bourgeois militancy” driven not by a sense of exclusion from majority politics but by a sense of birthright. But the elite core members of ACT-UP faced one great paradox, Cohen notes: “[T]heir class position could not benefit them in the absence of a cure.”
As it happened, they would settle for a promising treatment. It seems, in retrospect, as if the successful protease therapies disarmed and de-radicalized ACT-UP’s cause. After several rowdy years in the media glare, many of ACT-UP’s members burned out or died, and many more who survived began benefiting from the new drugs they had demanded.
In July, Larry Kramer, the abrasive playwright and founder of ACT-UP, delivered a eulogy at the memorial service for fellow activist Stephen Gendin at the Lesbian and Gay Community Center in New York. Kramer taunted his audience: “Is your life wonderful now? Do you feel clean? Have all these shitty drugs we fought so hard to get made you feel wonderful and clean?” ACT-UP “never finished the job,” Kramer ranted on. “We started something, and when a bunch of rebels left us, we let them get away with it, almost grateful that somebody else was going to be doing the work now….But in their leaving, ACT-UP pretty much fell apart.”
It was never as though ACT-UP’s members were lifers in protest politics, anyway. In fact, quite to the contrary, they advanced interests that proved more personal, in the end, than political. ACT-UP/New York, the group’s keystone chapter, “fell apart” because it spoiled itself. The chapter, Cohen writes in a 1997 article in the Journal of the History of Sexuality on the group’s demise, could raise hundreds of thousands of dollars a night at celebrity-heavy galas and auctions and through direct-mail campaigns. But it could also spend extravagantly on collateral bric-a-brac: For one 1990 protest in San Francisco, ACT-UP budgeted $83,000. Its members preferred to fly to their noisy interventions and sleep in hotels, which are extraordinary perquisites by the standards of radical activism. At the end of 1993, ACT-UP/New York’s costs overran its income by $25,000. Cohen cites one line item for graphics: Rather than carry handmade signs, the group leased a fancy photocopier to produce presentation-quality placards for $10,000 a month, which was, at the time of its first protest on Wall Street, equal to the yearly cost of a prescription for AZT.
Since then, ACT-UP has seemed nigh invisible. “Our presence has diminished,” concedes Wayne Turner, coordinator for what is left of the old ACT-UP/DC. Turner counts about a dozen regular members in his group, working on policy behind the scenes, he says, rather than in the streets. “I think there’s a sense among [former ACT-UP members] of ‘I got mine. I got my drugs and my Section 8 housing, so why should I bother fighting for anybody else?’”
As the demonstration on Capitol Hill wound down a few weeks ago, the protesters went limp and were carried to a police transport wagon. The black coffins were removed from the middle of 1st Street. Several people inside the RNC building looked down on the scene from the upper-story windows, which were covered with signs for various Republican candidates. Yet for all of ACT-UP’s fervor, the protest on this occasion seemed stale, rote, and totally peripheral to anything that anyone else was talking about during this election season. During the previous presidential election, surveys found that the typical voter listed AIDS as one of the top three concerns facing this country. This time, AIDS did not fall even within the top 30 worries on most voters’ minds. The last presidential election was, of course, in 1996, which was both the year that protease inhibitors first hit the market and the last year that the words “ACT-UP” appeared as a discrete subject heading in the Reader’s Guide to Periodical Literature.
In October 1999, I had abdominal surgery at Washington Hospital Center. I woke up from the operation in a sodium-pentothal haze, feeling as if I had been hit over the head with a frying pan, and whenever people in the recovery room spoke to me, it sounded as if they were shouting, including my surgeon.
“Mr. McKee!” the surgeon seemed to bellow. “Good news: We got everything.” Then, just before I could go back to sleep, he added: “But, Mr. McKee, we tore our gloves a couple of times, and there was a lot of blood. We need your consent to do an HIV test.”
Jesus. How am I supposed to sleep now?
I consented. If I had followed all the rules about safe sex since the last time I’d tested negative for HIV, in 1995, I wouldn’t have had anything to worry about. But I had not followed all the rules, and I had not bothered to put myself through another HIV screening. The phenomenon of protease inhibitors had played a large role in my rationale: I had told myself that HIV infection didn’t seem like the death sentence that it once did. I didn’t try to get HIV, but if I were to turn up positive, I figured, I could be treated, just like Brian and all the other HIV-positive people around us.
And yet I knew better, at least intellectually: I knew that AIDS still kills. I knew better than most of those people under the age of 25 who, according to the CDC, represent half of all new HIV infections.
I lucked out. I didn’t have HIV.
There are two factors undermining HIV prevention: fatigue and self-delusion. People have gotten inured to hearing about “safe sex”and even more tired of practicing it. In San Francisco, the gay community was one of the cradles of the epidemic in the early ’80s before turning itself into one of the world’s most vigilant HIV-prevention zones a decade later. Now, public health officials there are the first in any U.S. city to see a rise in the rate of new HIV infections after years of watching them fall. The city’s health department has found that 1997’s rate of new infections, 1.3 percent of people tested, had more than doubled, to 3.7 percent, in 1999. And San Francisco, along with Boston, has seen a recent outbreak of syphilis, which may portend an even higher spike in new HIV infection rates: It suggests that more people are having unprotected sex.
In July, the Journal of the American Medical Association reported the results of the four-year-long Young Men’s Survey completed by the CDC, which focused on 3,492 young gay men (or “men who have sex with men””MSMs” in official parlancebecause many do not identify themselves as homosexual). The survey found that 41 percent of those interviewed had had unprotected anal sex within the previous six months.
Add that to the mounting evidence of an errant “post-AIDS” reverie in the First World: A study released in March by INSERM, the French Institute of Health and Medical Research, queried 191 gay and bisexual men in France taking protease inhibitors and found that they were three times likelier to have had unprotected sex after starting on the protease drugs than before. In January, at the Conference on Retroviruses and Opportunistic Infections in San Francisco, researcher Stan Lehman of the CDC reported results from the agency’s HIV Testing Survey of 1,986 people. One in five who said he or she engaged in high-risk sexual behavior or shared needles had rationalized that behavior in light of the new treatments.
You can walk out to a nearby Metrobus stop in most parts of D.C. and see advertisements for the antiretroviral drugs such as Zerit, aka d4T. The ads show strapping men climbing rocks, riding mountain bikes, or simply gazing gamely at the camera. “They look really strong and healthy,” says Allison Bauer, an HIV-prevention specialist at Sasha Bruce Youthwork, a nonprofit in the District that works with troubled kids. “That’s great for the drug companies that want to market their products, but [the ads] make it harder to say to kids, ‘Hey, this is a really bad illness, and these are really expensive medicines, and there’s no guarantee we can get you these even if you’re sick. And no, not everybody who’s sick is gonna look like that.’”
The other day, a friend and I were talking about all this and he asked me, “What do you expect to happen?”
I might as well take up tarot or tea leaves before I try to answer.
“Complacency” has become the byword in professional AIDS circles, from the National Academy of Sciences’ Institute of Medicine on down, but that that’s not quite right. Your average pedestrians aren’t so much complacent as they are ambivalent about AIDS. Nobody knows what to think about AIDS anymore. Death is no longer a certainty, and life is…no longer a certainty.
Brian’s protease drugs have served us well. He has “stabilized,” his doctor says. But he has, as expected, begun to show signs of resistance to them. When he first began taking the drugs, his viral load was too low to count. Now, it’s still low, but it’s been rising slowly, and we simply hope the drugs’ efficacy will last until even newer treatmentsor a vaccine, for goodness’ sakebecome available. So far, there are not many alternatives to his current therapy.
Why get excited? We tried hysteria, the opposite of complacency, but hysteria is a hard mood to sustain, and its dividends are just as transient. The public has been hit with wave after wave of disease chic, with patterns copied right from the sketchbooks of the old AIDS activists. First, it was breast cancer and the “Race for the Cure,” the latest iteration of which is “Shop for the Cure,” sponsored by American Express. Robert J. Dole brought prostate cancer and erectile dysfunction right into our homes. Hodgkin’s disease’s worst mistake was to strike NBC executive Brandon Tartikoff, whose widow, Lilly Tartikoff, has now arrayed half the entertainment industry against various cancers. Who could have missed the WebMD Rock ‘n’ Race to Fight Colon Cancer, which took place here on Oct. 8, starring Katie Couric, Rosie O’Donnell, and Dennis Franz? And I’d say 2001 looks good for fibromyalgia or ankylosing spondylitis.
Meantime, Brian had an anomalous chest pain several days ago (it passed quickly), and, lately, his tongue hurts. Just around the edges, but it hurts. Now what the hell does that mean? CP