Daring the Impossible: Planning for the Future

Tom Bianchi, HIV-positive and holding, uses two words to describe the situation in which he finds himself: “Future shock.”

Seated on the sofa of his Park La Brea townhouse, an arm around his partner of five years, Mark Prunty, Bianchi recalls that three years ago their therapist was “trying to prepare us for my demise. I was right at the ‘Oh, my God!’ mark.”

When Bianchi’s condition was diagnosed in 1989, getting the AIDS virus was a death sentence. But today the “drug cocktails,” a mix that includes the new protease inhibitors, and other therapies have reduced the virus to undetectable levels in many people who are HIV-positive or have AIDS. Bianchi is one.

“We have a new kind of creature that we’ve never seen before, somebody who doesn’t seem to be dying or facing imminent death,” says psychotherapist Garry Corgiat of Pacific Oaks Medical Group in Beverly Hills; his practice is devoted largely to gay men with HIV.

“This population is trying to create a niche for itself. It’s like discovering a whole new species, in a way.”

Corgiat says people with HIV and AIDS “are no longer willing to be treated like pariahs” in the gay community. At the same time, many feel confused and rudderless. “They’d been told they were going to die” but now must face the responsibilities of living, including rethinking relationships.

Says Bianchi: “We know boys who went off to every circuit party in the world--to flame out fabulously.” A couple Bianchi and Prunty know just broke up. With things looking up, “The partner who was HIV-positive wasn’t going to stay in a relationship he wasn’t happy with.”

Bianchi, 51, a former senior counsel for Columbia Pictures who quit the law to be a painter and published photographer, and Prunty, 31, a computer graphics designer, are among those living through the sea change.

They met five years ago at a book signing party for Bianchi. Two years earlier, Bianchi had buried the man with whom he’d had a long-term monogamous relationship that predated safe sex.

Back in circulation, and HIV-positive himself, he thought, “I’m an outcast and nobody will ever touch me again.” But Prunty didn’t consider him a leper: “I didn’t know anybody who had died of AIDS. Of course, I knew it was a death sentence. But it wasn’t an issue and I don’t know why.”

Before they met, Bianchi had been severely depressed, with skin eruptions and other physical symptoms. Thinking his time was short, he wanted to do something meaningful for his community. Publication of his first of six books, 1990’s “Out of the Studio,” a photo study of gay relationships, gave him “renewed energy and purpose.”

But several years into his relationship with Prunty, his health began declining. He chose denial. “I’d cover the little flaws with a tube of Erase and I thought I looked fine.” The truth--wasting syndrome--hit him when he saw a “profoundly shocking” videotape of himself.

Prunty says, “I pulled away a little,” mostly out of frustration with Bianchi’s refusal to take care of himself. Still, he says, “I wasn’t leaving him.”

Bianchi was gripped with the fear “that Mark would have to go through the story that I knew way too well. I already had a prayer list that was over 200 names long” of those who had died of AIDS, including four former lovers.

But Prunty wouldn’t allow himself to think of losing Bianchi--”Not until he was on his death bed would I acknowledge it.”

Bianchi had steadfastly refused commonly prescribed drugs such as AZT--”I’d watched too many people gobble up that stuff--and die.”

In November 1993, a very ill Bianchi found Allen D. Allen, a Los Angeles physicist who with a group of doctors was conducting the first human studies on a generic drug now called Cytolin, a biologic made from antibodies produced by mice injected with antigens. Unlike drugs such as AZT that subdue the virus, Cytolin’s mission is to prevent a subset of CD8 “killer” cells that proliferate in HIV from adhering to, and killing off, noninfected CD4 (white) cells.

He is, in essence, one of 188 volunteer guinea pigs who have been injected with the drug under supervision of their doctors. (Licensed physicians may, by state law, prescribe, and have pharmacies compound, experimental drugs for their patients.) Bianchi is asymptomatic and says his viral load has decreased from 721,000 to “technically nonexistent” and his CD4 count has increased dramatically.

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With Cytolin, he found both a therapy that so far has appeared to work for him and a calling. He’s helped raise $1.25 million for Cytolin research and is a vice president of CytoDyn, the company that just received Food and Drug Administration clearance for a 60-day clinical trial on 16 subjects under supervision of Los Angeles AIDS specialist Dr. Victor L. Beer, a first step toward FDA approval to market the drug.

“Poor Mark,” says Bianchi, who, though totally absorbed in HIV work, tries not to fall into a trap where “the disease is the agent that gives you the attention you need” and become “an absolute crashing bore.” Still, there are times, Prunty says, when “I just find my own conversations” elsewhere.

Admittedly, Bianchi has used HIV to manipulate. Once, when Prunty was angry at him, he demanded, “Why are you doing that? I might only have a little bit of time left.” He’s also used HIV as an excuse for not having to do what he didn’t want to do, such as balance his checkbook. For now, at least, these aren’t options.

Blood test by blood test, Bianchi dares to believe he’s winning. In January, for insurance, he added a regimen of FDA-approved drugs--16 pills daily--including AZT, 3tc and saquinavir, one of the protease inhibitors that stabilize immune system damage.

Still, the specter of AIDS is always there. To him, HIV has been a double-edged sword. Without it, he says, “I don’t know that my relationship with Mark would have been as profound.” They wear rings and consider themselves married. Having put their financial affairs in order, setting up a trust, they can avoid talk of death.

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As yet, no one dares speak of a cure for AIDS. “You don’t want to set yourself up for disappointment,” Bianchi says. “People are being lulled into thinking we’ve got this problem licked.” Rather, he says, patients have been given a temporary reprieve--at a price. That price? “Being vigilant,” which includes practicing safe sex, as he and Prunty always have.

Corgiat points out that young gay men continue to become infected, citing “a rebound from a community being constrained for too long,” escalating use of crystal methamphetamine--and, with it, unsafe sex--and, now, a belief that AIDS won’t kill them.

Safe sex is vital, he emphasizes, but today an HIV-negative man can start a relationship with an HIV-positive partner largely without the fear, “Is this person going to get sick and die?” That changes everything.

Still, not everyone will have access to the drug combinations, which can cost $15,000 a year or more. Not everyone benefits from the new therapies, nor is it known whether remissions will prove to be permanent.

Bianchi and Prunty are making plans for 20 years from now. Still, Bianchi knows, “I’m here against all odds. We may hit a wall we don’t know about and you’ll read my obituary next week.”

For now, he says of himself and others in remission, “This is an extraordinary trip we’re on.”