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HEALTH : Portrait of Courage : Michael Callen Fights for Life, and the Means to Defeat AIDS

Times Staff Writer

Six-and-a-half years after he was found to have AIDS, Michael Callen--author, activist, singer and songwriter--half-jokingly credits his longevity to “luck, Classic Coke and the love of a good man.”

Friends have other ideas. They attribute Callen’s survival to grit, hope and a refusal to bow to conventional wisdom--the same qualities that have powered Callen’s role as a major player in the war against acquired immune deficiency syndrome.

While some people would have AIDS patients romanticize death and “walk toward the light,” Callen instead talks of “wrestling this beast to the ground.”

“This life is the light,” he insisted this month while visiting Los Angeles. “If there is a heaven, this is it.”

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Callen’s tenacious fight for life--his own, his friends’ and those of the half-dozen organizations he started and nurtured--has transformed him into a role model for people with AIDS and a major figure in formulating society’s response to the epidemic.

An Evolving Role

His longevity has allowed his influence to stretch from the safe-sex battles of the early 1980s to the AIDS “self-empowerment” movement that blossomed mid-decade, to the current drive to speed promising drugs to patients.

“When the history of this epidemic is written, Michael Callen will be up there with the heroes,” said Christopher Babick, deputy director of the People With AIDS Coalition in New York, where Callen lives.

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“Michael Callen has been a role model for thousands of people, a symbol of hope when there was none, an AIDS advocate before there was an AIDS advocacy movement,” added David Corkery, director of communications for the American Foundation for AIDS Research.

Callen also draws praise from the mainstream. Callen’s is “a voice of urgency, but also a voice of reason,” said the Rt. Rev. Paul Moore Jr., Episcopal bishop of New York, who served with him for three years on the New York State AIDS Advisory Council.

Another panel member, New York State Health Commissioner Dr. David Axelrod, credits Callen with having had “a major impact on the direction and formulation of public policy.”

The subject of the accolades is a fresh-faced son of the Midwest who, at 33, looks like a cross between a GQ model and the church choirboy he once was. Nothing in Callen’s appearance--from the jade-green eyes that sparkle with intelligence to an energy level that confounds his doctors--suggests illness.

Indeed, Callen’s apparent robustness has led to whispers that he really doesn’t have AIDS.

Put Rumors to Rest

Last month, Callen put the rumors to rest by publishing a copy of the pathology report of his Kaposi’s sarcoma diagnosis, along with a letter from his physician, in People With AIDS Coalition Newsline, the monthly magazine he edits.

“There are easier ways to meet Liz Taylor then by pretending you have the most stigmatized disease of this century,” Callen said dryly, rolling up a shirt sleeve to display a Kaposi’s sarcoma lesion for emphasis.

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“It doesn’t help me to know only my death will prove to some people that I haven’t been a fake all this time,” he added.

Actually, Callen’s long-term survival isn’t as unusual as commonly believed. A paper published in the New England Journal of Medicine in 1987 found that 20.7% of non-intravenous drug using gay men with AIDS were still alive four years after diagnosis.

With the advent of new drugs and better patient-management strategies, that percentage has likely grown.

‘Denies ... Our Survival’

“The unthinking repetition of the notion that everyone dies from AIDS denies both the reality of--and, more importantly, the possibility of--our survival,” Callen said.

“If, as I suspect, there is a biologically defined will to live, it probably requires hope, much as the body requires oxygen. I don’t say hope will guarantee you’ll beat AIDS, but you’ve got to have it to be in the running.”

Still, Callen is careful not to deny the reality of death. Whenever he delivers the “hope speech,” he adorns the stage with five empty chairs to remind the audience that most people do not survive as long as he has.

It is the type of theatrical gesture that fuels occasional criticism, most from within the AIDS community, that Callen is a grandstander, or that he is riding the tragedy of AIDS to celebrityhood.

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The criticism wounds him, though “I am learning to develop a thicker skin,” he said. “Would people say Elie Wiesel has used the Holocaust to enhance his fame?”

It is an apt comparison for, like Wiesel, Callen is driven to confront society with the magnitude of the tragedy that has befallen those he considers his people: people with AIDS.

Stepping Over Bodies

“Living with AIDS is like living in wartime, only in the twilight zone,” he said in a speech last year. “A majority of your fellow citizens don’t seem to realize there’s a war going on, don’t hear the bombs dropping, the shells whizzing past your head, don’t have to step over the dead bodies of friends and loved ones.”

Besides a constant barrage of diseases--Callen’s illnesses have included cryptosporidium, Kaposi’s sarcoma, shingles, thrush, herpes and, possibly, lymphoma--Callen also draws flak for his outspoken championship of unpopular positions.

In 1982, for example, barely a year after AIDS was first recognized, Callen helped shock the gay community out of complacency with a toughly worded denunciation of the fast-lane life styles of some gay men.

“Denial will continue to kill us until we begin the difficult task of changing the ways in which we have sex,” Callen and a co-author argued in a landmark New York Native article. The piece, “We Know Who We Are,” won Callen few friends, but it paved the way for the safe-sex movement that has saved thousands of lives.

Ideas Were Radical

When the Native refused to publish further articles, Callen and his physician, Dr. Joseph Sonnabend, and two others wrote a pamphlet titled “How to Have Sex in an Epidemic: One Approach.” It proposed the then-radical ideas of using condoms and avoiding exchanges of semen and blood, and was financed with Callen’s tax return.

Callen was also a leading intellectual force behind the AIDS “self-empowerment” movement, whose guidelines he co-authored in 1983.

“We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness and dependence upon the care of others. We are ‘people with AIDS,’ ” the guidelines declare.

More recently, Callen has been a leader in the crusade for faster and wider access to promising anti-AIDS drugs. He co-founded New York’s PWA Health Group, the first of a network of buyers’ clubs for “underground” remedies. The clubs helped prod the U.S. Food and Drug Administration to relax regulations against importing medicine for personal use.

Reshaping Ethics

Callen and another man with AIDS, Tom Hannan, also started the Community Research Initiative, a grass-roots group of people with AIDS and their doctors who are conducting clinical drug trials. The group is helping to reshape the ethics of drug trials by, for example, testing drugs at varying doses and against one another, rather than against placebos.

“I respect his thinking enormously,” said Dr. Mathilde Krim, founding chair of the American Foundation for AIDS Research and a former member of the Community Research Initiative’s governing board, which Callen chairs.

With his mentor, Sonnabend, Callen has also been a strong and early voice calling for the routine administration of drugs to prevent rather than simply to treat the most common complications of AIDS. He attributes his own long survival in part to such a regimen.

“Instead of holding out for a Nobel Prize, the first question researchers ought to have pursued was this: What is the No. 1 killer of people with AIDS, and what can be done to prevent it?” Callen declared in a speech last year to federal health officials.

Vindication, Again

Again, Callen’s views are being vindicated. Last month, the FDA embraced Callen’s call for routine use of aerosol pentamidime in people with weakened immune systems.

The agency acted after a study demonstrated the drug is highly effective in preventing pneumocystis carinii, which kills most AIDS sufferers. Doctors predict that widespread use of the drug will change the face of the epidemic.

Callen propagates his views in speeches and TV interviews across the country; in Newsline, the magazine he founded to break down isolation among people with AIDS; and in two books he has edited: “Surviving and Thriving With AIDS,” Volumes 1 and 2. (He just signed a contract to write a third book for Harper & Row.)

“Michael types faster than most people can think,” said Richard Dworkin, Callen’s lover of six years. But then, he added, Callen does everything “at an intense pace. It’s like he’s trying to cram a lifetime into a day.”

Drummer and Lover

The pair met when Callen, his illness newly diagnosed, placed an ad seeking musicians for a rock band. Dworkin became Callen’s drummer--and his lover.

“He was smart. He could cook. He could sing. And he had a lot of books,” Dworkin recalled. “My thinking was that he would die pretty soon, in which case we’d have some time together, or that he’d recover.”

“I feel so lucky Richard was crazy enough to fall in love with me when I was ‘damaged merchandise,’ ” Callen said. “I feel compelled to get the message out: AIDS is not an excuse to give up on love.”

The medium for that message is his music. His new album, “Purple Heart,” is about love and life in the age of AIDS. He sang his trademark ballad, “Love Don’t Need a Reason,” at a fund-raiser this month for the AIDS advocacy group Being Alive in Los Angeles:

Love don’t need a reason.

Love’s never a crime.

Love is all we have for now.

What we don’t have is time.

“He was a good singer before his diagnosis, but after it he became great,” said Marsha Malamet, who co-wrote the song with Callen and singer Peter Allen. “There was a complete abandonment of inhibition and fear.”

‘Share the Wealth’

Callen’s espousal of “The Healing Power of Love” (another song he co-authored) led him to yet another endeavor: the creation of monthly “singles teas” for people with AIDS in New York. The teas, sponsored by the People With AIDS Coalition, draw several hundred people, and dozens of matches have resulted.

“It’s my attempt to share the wealth,” he said. “Rich hates it when I say this, but there have been dark and difficult times when I am reasonably certain I would not have survived without his love.”

Callen’s vigorous championing of love reflects the passion of a recent convert. Until his diagnosis, he said, he was afraid of intimacy.

“What I picked up from society while I was growing up was that male homosexuals were wildly promiscuous, lonely, unable to sustain relationships, effeminate and vaguely criminal--so I was.”

Had No Role Models

Callen said he now realizes that “my choices were circumscribed by homophobia. There were no positive role models. It’s not as if I could have gone up to some cute guy in high school and asked him out on a date.

“The notion of gay people being proud of who they were, of organizing around it politically and fighting back, that concept didn’t reach me” in Hamilton, Ohio, where he grew up as the son of an auto worker and a schoolteacher.

Callen began coming to terms with his homosexuality as a student at Boston University. His discovery that society was “wrong about gay people” has fueled his skepticism about other perceived truths.

Among them is the belief that AIDS is invariably fatal.

Looking at Death

“I don’t deny that people die. I don’t deny that at some point, you want to help people die with dignity and grace. It is just that some would have us start that process much too early.

“Clearly, there is a point in AIDS--I’ve seen it again and again--where the spirit lets go. And that’s OK. . . . I don’t pretend to know how I would be if that time came.”

Callen, with Sonnabend, also doubts the widely accepted hypothesis that the human immunodeficiency virus, HIV, is the cause of AIDS. While the circumstantial evidence for it is strong, and almost the entire scientific establishment believes that HIV causes AIDS, Callen argues that “science is not a democracy.”

“Belief that HIV has been proven to be ‘the cause’ of AIDS has many of the characteristics of religion: As ‘revealed truth,’ it is not wholly rational but emotionally reassuring and certainly influential,” he wrote recently.

Callen admits to having a vested interest in keeping the debate alive.

“I am apparently an HIV factory,” he said. A recent stomach biopsy revealed some of the highest levels of viral activity ever found.

“Maybe the secret to survival,” he mused, “is not to believe in HIV.”


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