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Why Author Considers 'AIDS Industry' Inept : Books: Elinor Burkett says too much emphasis is placed on money and not enough on a cure. And, in a nod to critics, she admits the work is venomous.

December 10, 1995|BETTIJANE LEVINE | TIMES STAFF WRITER

Somewhere in Michigan is a middle-class, middle-aged woman whose married daughter was pregnant last year. It was a high-risk pregnancy, and the obstetrician asked the mother to be ready to donate blood, since both mother and daughter had the same rare type.

The mother, of course, said she would.

Then she went to the family doctor for a checkup and mentioned that she might give blood to her daughter.

The doctor said, "You can't do that."

The mother asked why not.

The doctor answered, as gently as he could, "Because your husband has AIDS, and you may be infected too."

And she was.

Her HIV test came back positive.

By telling the wife about her husband's illness, the physician had broken state law, which states that doctors may not violate the confidentiality of a person with HIV. He could have been prosecuted.

But in breaking the law, the doctor saved two lives--that of the woman's daughter and the healthy baby who was eventually born--both of whom risked infection with HIV if the mother's blood had been transfused.

"Can you believe such a senseless law?" author Elinor Burkett asks, her voice an irritable rasp through the phone from her home in New York. "Can you imagine the tragedy if the doctor had kept his mouth shut?"

There's not much that makes sense to Burkett in what she calls the AIDS industry--a combine of certain doctors, politicians, government research scientists, pharmaceutical companies, home health care providers, gay community leaders, CDC officials, funeral and health insurance bureaucrats, the media--all of whom Burkett believes may have cashed in, or copped out, or been misled, or succumbed to greed and ego, thereby turning the human immunodeficiency virus into a political football and money machine.

Burkett's tale of the Michigan mother is one of dozens she can toss out to illustrate the myriad frustrations, contradictions and corruptions in all areas of life related to HIV and AIDS. But her new book, "The Gravest Show on Earth" (Houghton Mifflin), she explains, is "no heart-rending account of the shrunken faces of the dying." Those stories have been told, she says, and the telling has not made much difference:

"Caring does not kill viruses."

Instead, Burkett presents a litany of rants against roads wrongly taken by almost every group involved with the disease. It is not so much a book, she admits, as a "howl of venom, wrath, hysteria, fury and desperation."

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Perhaps it is because she penned much of it while hooked up to a chemotherapy machine at Johns Hopkins Hospital, which was kind of ironic, she says, since "I was being treated for one kind of cancer [lymphoma] while writing about another [AIDS]."

As if that wasn't enough, her latest roommate had just died of AIDS, her father had died of cancer a year before, and she had just lost her mother due to complications from osteoporosis. But don't mistake that explanation for an apology, she says. "I'm glad I wrote it."

She has been criticized in print and in private for the book's relentlessly downbeat, accusatory approach.

"That book is vicious," says Sean Strub, publisher of Poz magazine, who returned The Times' phone call from a Detroit airport where he was between planes. "Where does such a negative attitude leave someone like me? I've got AIDS and I'm so covered with Kaposi's sarcoma lesions that people run from me in airports. She is telling people like me that there is no hope, that there are no good guys, that all is lost. That is not constructive."

But Dr. Joseph Sonnabend of New York, one of the country's first specialists on acquired immune deficiency syndrome, says he thinks Burkett's "anger is totally appropriate and her criticisms quite valid. A lot of individuals purport to be doing good work on this disease when in fact their eyes are only on the money."

Burkett says her objective was simply to tell the truth and vent her rage at the ongoing errors in the attempt to curb HIV and AIDS.

Heterosexual women are perhaps at greatest risk right now, she says, because they have been the least warned and the least informed. And the media still aren't eager to talk about it.

Newspapers and TV are in a real bind, she says with a compassion that probably stems from her own days as a journalist at the Miami Herald, where she covered AIDS from 1988 to 1992 and earned a Pulitzer Prize nomination for her reporting.

The sexual content of what must be written is too incendiary for family newspapers. No one wants to open the morning newspaper and be confronted with such graphic stuff, she says. The gay community did a good job of informing its members about risky behavior, she explains, but there is no activist community to educate heterosexual women.

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