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.

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.

These women still tend to think that if a man is “a good person” and really cares about you, then he is not someone who will transmit HIV. But Burkett says seemingly “nice men” are transmitting it every day to women, either because they do not know they are infected or perhaps because they are unwilling to forgo activity that is dangerous to their partners.

Burkett spent most of her adult life as a history scholar, teaching for 13 years at Frostburg State University in Maryland.

“I was approaching 40 and bored out of my mind,” she recalls. A journalist friend suggested that she might like newspaper writing.

Burkett took a one-year course at Columbia University’s Graduate School of Journalism and hired on as “the oldest intern ever” at the Miami Herald.

Her interest in AIDS resulted from where she chose to live on her meager intern’s salary--above a restaurant in the Cuban section of Miami. The waiters downstairs, who soon became her good friends, were mostly gay and an amazing number of them were getting sick. Since no one on the paper was writing about the new disease, Burkett made it her beat.

Burkett says AIDS has become a lens through which she looks at all the great problems facing our country, such as drugs, gangs, education, immigration and health care. She believes that inflated egos, money lust, political correctness and corruption have combined with a lack of deep moral and ethical conviction to turn us into a nation of “issue surfers” who pay lip service to all these problems while feeling superior to them, as if they will never touch our private worlds. Therefore, we don’t even try to understand them or to press for real solutions.

Why is there no cure yet for AIDS? Burkett says it’s because the U.S. government has botched research from the start.

It has spent multiple millions of dollars in the past 11 years duplicating the exact same research on the exact same drugs that were being researched by major pharmaceutical firms.

That was senseless, she says, because those companies are able to do their own research, as they always have. During those 11 years, government scientists should have been looking into the other possible treatments and firms that do not have the resources to do the research themselves but may just have found something that would lead to a cure.

It is impossible to say how many opportunities may have been missed, she adds. Since the big pharmaceutical firms work only on drugs that are patentable and can make big profits, it turned out that neither they nor the government investigated drugs already owned by smaller firms or substances owned by no one because they are found in nature: herbs, food products or vitamins, for example.

Government research was our best hope for a neutral search for a cure, regardless of where it came from or whether it could make money. But it has failed us, Burkett says.

In fact, the inflated egos of those who led the research resulted in a search for a cure before the basic science was done to understand the illness.

“Does HIV really cause AIDS, and if so, how does it do that? You can’t cure something you don’t understand,” she says.

AIDS specialist Sonnabend agrees with much of what Burkett says, especially regarding the government’s approval of AZT, which he says “was pushed through in an inappropriate way, even though the science surrounding it was shoddy. It has caused us endless trouble today because it has been used as a standard and that has retarded us enormously.”

About doctors who work with AIDS patients, Burkett says: “There are obviously many fine ones. But a group of basically young doctors is making a financial killing off of AIDS. They own and operate their own labs, and do huge amounts of unnecessary testing on patients who have health insurance, and they make an incredible profit.”

It is also routine practice among AIDS doctors around the country to take kickbacks from home health care companies, she says.

As for the numerous organizations that have sprung up to help the HIV-positive and AIDS population, she says many have become bureaucratic and bloated, using private donations and government funds for outrageous executive salaries and multimillion-dollar investments in real estate.

Burkett alleges there is far too little oversight of funds the government distributes. With all of the do-good groups dashing for a slice of the same financial pie, she says, many cities have senseless duplication of services, or else a division of services that sends patients needlessly traveling from one organization to another to obtain services that should be housed under a single roof.

And, depending on who you are and where you live, she says, you may get no free services at all and barely any medical attention.

Back on the issue of unfairness to women, Burkett rails that women do not have the same access to experimental AIDS drugs as men do because the FDA is afraid that women of child-bearing age might become pregnant and produce deformed babies due to use of the drugs.

It’s such a big mess, Burkett sighs. But all is not gloom and doom in her own life. In the midst of writing her book, fighting her own illness and coping with grief over the loss of her loved ones, Burkett met the man of her dreams. She recently married him and hopes to live happily ever after in the house they are building in a pretty village in upstate New York.