Jeff Getty tells Bruce Shenitz why he respects doctors who risk his life.
When we met in California, activist Jeff Getty knew nothing about whether the baboon infusion would be successful. Nevertheless, he was excited when talking about the procedure, which he likes to refer to as “a 37-minute bungee jump.” For Getty, the significance of the operation doesn’t lie just in the fact that it was a first. “I saw the seams of AIDS research stretching,” he says. “One of the most compassionate moments I’ve ever had in dealing with AIDS researchers and doctors was when I realized that they were willing to kill me, right there at that moment, in a one-shot attempt to learn something that would possibly save me, rather than do nothing and watch me fade.”
“Aileen Getty Comes Clean” to Judith Lewis about disclosure, beginning at home.
“Everyone has a right to participate in one’s life and death. I think I would be robbing my children if I didn’t tell them that I was supposedly going to die, or that I’m an alcoholic. They have that right to confront those challenges now, rather than later. I think that oftentimes what we call grief after death is not grief but guilt, regret that we have not fully participated in the life of a loved one.”
Bruce Schoenfeld gets in the locker room with the NBA PWA and asks “Do You Believe in Magic?”
For now, the world is watching. Sitting in the visitors’ locker room in the bowels of ARCO Arena, he looks away when I tell him that AIDS activists such as [Larry] Kramer harbor a deep disappointment at his lack of visibility. “I know what I’m doing, and because I’m comfortable with that, I don’t care what people say,” he tells me. “There’s some people working in the trenches, and I salute them. Others on the medicine side, doing what they do. But what I’m doing has always been needed. Getting it the attention.”
He’s doing more consciousness-raising by spinning past Billy Owens than he would be sunning off the coast of France on his yacht, as he did last summer. He may be a disappointment to activists such as Kramer, but he remains the best ambassador PWAs have to the HIV negative world—and an inspiration to anyone who feels constrained by the possible. In some ways, a driving lay-up speaks with an eloquence no press conference ever can.
It’s “Fast Times at Hillsboro High” when Sex columnist River Huston strikes a Truth or Dare pose.
I have been giving lectures at Hillsboro High School for the last three years. One day I pulled out my new demonstration penis. I told the students how to place said condom in mouth: “With your tongue, secure reservoir tip on that penis.” I usually stop after I cover the head, assuring them I could go all the way.
It was about at this point that I noticed a woman frantically snapping photos. I just thought it was one of the librarians. (They love my lectures.) So, on a whim, I decided to show her how to do it with no hands. Click! Click!
At 7 o’clock the next morning, a fellow from 101.5 FM calls about the alleged six-inch purple sex toy I had in my mouth while leading a group of hapless students in a lewd chant. “Would you like to say a few words to our listeners in your defense?” he asked.
Well, I did 22 talk shows that day, all the network news shows, every major newspaper in New Jersey, plus The New York Times. There were press conferences and mobs of angry parents. The next night, David Letterman included me in his monologue.
Some other AIDS educators said I damaged our reputation and set AIDS education back. I can only say that before I walked into that classroom, I said what I always say: “What are the guidelines today?” The lady who introduced me responded, “Go for it—they need to know it all.” Well, now they do. Not just about safer sex, but about the realities of sexual shame and the powerful effect it has had on all of us.
In “Attack of the Mutation Monster,” supersleuth Mike Barr breaks the HIV “Supervirus” story.
Across the Atlantic, British virologist Dr. Clive Loveday was discovering unsettling implications of mutant HIV. In one of his own resistance studies, Loveday included a provision that was elegant in simplicity: Patients who had developed resistance to AZT he simply took off the drug. It was basic Darwinism, he thought. Remove the evolutionary pressure of the drug, and the dominant viral population would revert back to the original strains. The only problem was, that’s not what happened. Even after removing AZT, the five-times-more-deadly AZT mutants flourished.
This was a stunning amplification of the discovery that had horrified Dr. Victoria Johnson: Not only do AZT-resistant mutants increase the likelihood of illness and death, but they have an inherent ability to reproduce much faster than the wild-type strain of HIV. As was becoming increasingly evident, a peculiar interaction between AZT and HIV appeared, over time, to spawn a “Super-HIV,” as it were. The sort of sci-fi nightmare one would expect to see only in B-grade horror films now seemed to be taking place in flesh-and-blood humans.
Ever felt “Jesse Helms Must Die”? Stephen Gendin signs his name to it.
Some people think it would be better to inject some of my blood directly into Helms. Let him experience the joys of HIV. But I disagree. What if these new triple drug combinations really can eradicate the virus? I’d hate if Helms were the subject that proved they worked.
HIV is a terrorist’s bomb lurking in my body, and I never know when it’s going to blow something up. And Jesse Helms is the one who keeps trying to light the fuse.
Mike Barr’s “The Morning After” warns protease paraders to sober up.
In the Vancouver afterglow, two words—undetectable and eradication—took on totemic powers. The near-mystical allure of undetectable virus was so compelling that people at all stages of disease rushed to seek treatment. Friends who had started on anti-HIV therapy for the first time were told by their doctor just weeks later that their virus was now “undetectable.” “Does that mean I’m cured?” they demanded.
While a few old-time researchers and treatment advocates urged caution, nothing had been so hot since the heady days of AZT. In a season of re-election posturing and record-breaking AIDS fundraising goals, high-profile opinion-makers fed the flames of newfound hope. A decade of activism and research had borne its fruits at last.
In the absence of a cure, though, the finite benefits of these new drugs should be employed strategically—with the aim of conserving as many therapeutic options as possible, as first choices fail and lead to second choices, and second choices fail and lead to third. Look at Geoff Wiley’s experience. Bruised by ritonavir and burned by indinavir, Geoff now likens these combination therapies to “swatting down a nest of hornets.” “You’d better get them all,” he jokes, “because if you don’t, they come back madder than hell.”
Long-term survivor Richard Berkowitz recalls 1983 and “The Way We War.”
Led by Michael Callen and Bobbi Campbell, we drafted a declaration of interdependence that we presented at the close of the conference, with the fighting for our lives banner unfurled in our hands. Eventually dubbed the Denver Principles, this 17-point statement began: “We condemn attempts to label us as victims, a term which implies defeat, and we are only occasionally patients, a term which implies passivity, helplessness and dependence upon the care of others. We are People with AIDS.” We recommended that doctors treat PWAs as whole people while acknowledging their own agendas and anxieties. The audience responded with a 10-minute standing ovation. They were cheering, but they were also weeping. At a time when all that was asked of us was to lie down and die, we were 11 gay men in the prime of life—11 people with AIDS, 11 people with courage, dignity and pride—going off to war.
Beowulf Thorne takes the Prozac Nation on a few “Adventures in Brain Chemistry.”
Antidepressants tend to leave you with a dry mouth, lack of libido and constipation (or, as my dad shocked me by observing, a denial of life’s most basic pleasures). Paradoxically, impotence may on rare occasions be replaced suddenly by priapism, a pathological erection that won’t go away. Should this happen, it is not advisable to run out to the nearest sex club to field-test this new everlasting boner, oh no. You should instead hurry to your favorite emergency room, where the kind doctors and nurses will gently deflate it, lest it turn purple and fall off. Treating impotence may be as easy as adjusting the dose of your drug, or counteracting its side effects with another medication such as bethanocol, testosterone replacement or yohimbine. (“What’s that?” you say. “Yet another addition to the pill regimen?” Get over it. Your standing in the HIV community is directly proportional to the size of your pill box. Use your newfound status to commandeer the comfiest seat in your support group.)
In “Misplaced Lust,” John Weir bids a bittersweet adieu to ACT UP and his best friend.
ACT UP made me feel powerful for a while, but it turned out that my feelings weren’t important. My power didn’t keep David [Feinberg] alive. Dave’s death took everything with it, and now I can’t believe he was ever alive. What I have remaining are some photographs and my bad response to his death. I wrote mean things about him after he died. I stopped talking to all his friends. And the night before his memorial service, I went home with someone I knew he never liked. I lost whole realms when Dave died—five years in either direction, my sense that sex might be enough. Certainly love isn’t.
Issue 13 was lucky for Jeff Getty, a legend of patient advocacy for his successful fight to get a baboon bone-marrow transplant. Getty’s health rebounded (not due to the monkey business), and he’s now the top banana in HIVers’ organ donation activism.
When you’re J. Paul Getty’s heir and Elizabeth Taylor’s daughter-in-law, you can speak your mind. And Aileen Getty did exactly that, revealing the relevance of the recovery movement for many PWAs. Getty, a mom, no doubt read about the late GayLynn Brummett, who fought to keep her son after her HIV status led Nebraska AIDScrats to take him away.
June/July ’96 featured Magic “I don’t let AIDS dominate my life” Johnson on its cover, but writer Bruce Schoenfeld had to hustle his bustle to get Johnson to answer questions.
Daughter of activist Michelle, Raven Lopez launched her modeling career with the August/September ’96 cover. In a coup, TAG’s Mike Barr broke the story of multidrug-resistant HIV “supervirus”—three years before mainstream coverage. And a POZ 50 put Dr. David Ho at the head of the virology class when Time was still saying Dr. Who?
Brian Grillo, the testy lead singer of the now-disbanded Extra Fancy, let loose on record and drug companies alike. Cantankerous POZ contributor Kiki Mason died and, as he commanded, his caregiver wrote his last Life column.
Judith Billings, a Washington state official who nearly ran for Congress, was the hero of our Election issue. The villain? Bill Clinton, whose record on AIDS scored a grade of D (for Do nothing)—partly for dropping the ball on needle exchange. In an exposé Dr. Joycelyn Elders dropped the bombshell that the prez had planned to lift the ban after his election.
December ’96/January ’97 was a special HIVers-with-Hemophilia issue, informing readers on lobbying and lawsuit successes. Primo hemo Shawn Decker advertised his “My pet virus” website, and went on to his own popular POZ column, Positoid.
Showtune legend Jerry Herman swore he hadn’t hit his stride, proving it in his ’98 Broadway best-of comeback. In a sober take on the eradication euphoria, Mike Barr urged against early intervention and for conserving protease options. Two years later, experts agree.
For ACT UP’s 10th anniversary, Larry Kramer returned. Originally set as a Last Supper spoof with 10 other big egos, er, activists, the shoot “evolved” into a birthday celebration complete with mad-batter cake.