Mainstream doctors say 'fringe' science is risking lives of children

By Mark Kennedy

The Ottawa Citizen 7 Sept. 1999

A growing number of HIV-positive mothers in Canada and the United States are going into hiding as part of an "underground railroad" to avoid having their children treated with anti-AIDS drugs.

Some of the Canadian women, concerned that child-protection agencies will take away their babies, are fleeing to the U.S. to remain anonymous and stay beyond the reach of doctors.

The development is part of a recent trend that is infuriating the country's leading AIDS doctors and researchers.

A group of U.S.-based dissident scientists has argued for years that HIV is not the cause of AIDS and there's no point in taking the drug cocktails designed to prevent the virus from turning into AIDS.

They argue the side effects of the drugs are so severe that they pose a greater risk to the patient than HIV itself.

Montreal doctor Mark Wainberg, president of the International AIDS Society, dismisses the dissidents as "fringe people" who are trying to "make themselves out to be more important than they are."

He wishes people would just ignore them so their views aren't given credence.

"Let me give you an example. There are people out there who deny that the Holocaust happened. Do we want to give them equal credibility?"

Nonetheless, it appears the message is getting out, despite the best efforts of the medical community to persuade people with HIV that the anti-viral drugs offer the best, if not the only hope, of staying healthy.

Indeed, some HIV-positive mothers have chosen to go to court to prevent doctors from administering the drugs.

In the past two weeks alone, two cases have made headlines. In Montreal, a 37-year-old woman, Sophie Brassard, is battling youth-protection authorities to regain custody of her two children, one of whom is a seven-year-old whom doctors want to treat for HIV.

And in London, England, a court is being asked by public health officials to force a couple to have their four-month-old daughter tested for HIV. They fear the girl's mother, who is HIV-positive, may have transmitted the virus to her before or since birth. The child is being breast-fed against medical advice.

These court battles may just be part of a larger groundswell. In Virginia, a patient-advocacy group that provides legal defence for HIV-positive mothers already has nine cases under way. Since last spring, the group has been contacted by 60 women seeking legal help to bring their case to court.

"We think this is going to steamroller," says Deanne Collie, executive director of the group, the International Coalition for Medical Justice.

The group says its mission is "to provide for the defence of human and civil rights, including the right to free expression in the arena of science (and) ... the right of parents to participate in the choice of medical treatment for their children."

Ms. Collie says her office is swamped with calls from women seeking help. Already, she says, there is an "underground railroad" of American women constantly crossing state lines to keep one step ahead of child- custody officials.

Ms. Collie says she received a call last March from a young HIV-positive woman in Toronto who had just given birth. The woman came from a well-to-do family, lived with her parents, and held a good, professional job. At the time, her parents and the father of the newborn supported her decision to not treat the baby with HIV drugs.

But the next month, the young woman called Ms. Collie again. She had moved to the U.S. after her parents informed a doctor -- just before the baby was due for a regular checkup -- of her HIV status. The woman now works as a waitress and is paid in cash only.

It's not an unusual story, says Carl Strygg, spokesman for the Toronto chapter of Health Education AIDS Liason (HEAL), an AIDS support group with 24 branches across North America. The group doesn't believe the merits of HIV drug therapies have been proven.

"HIV-positive women are being persecuted," says Mr. Strygg, who also confirms how Canadian woman have "gone into hiding."

"It's a terrible tragedy, and I think it will get worse until more women are brave enough to stand up to the establishment and demand that their rights to make informed choices on behalf of their children are protected."

But Dr. Philip Berger, a Toronto doctor who treats AIDS patients, says the benefits of HIV drugs are undeniable. If drugs are given to a baby within hours of birth, the odds of it developing HIV can be significantly reduced. The odds are even better if the mother also takes the drugs during pregnancy.

"Adults with any disease have the right to refuse treatment," says Dr. Berger. "But with children, it's far more complicated. Once the child is born, I think the state has a duty to protect the child for any disease for which a parent is refusing treatment where the benefits are clear."

But Ms. Collie says many women aren't going to back down. She says courtrooms will become the battleground for a long-stifled scientific debate over whether HIV causes AIDS.

Ms. Collie says scientists should examine other theories, ranging from whether HIV has nothing to do with AIDS, to whether it is just one of many factors that contribute to the disease.

In San Francisco, the argument is echoed by David Rasnick, a chemist who is president of the Group for the Scientific Re-Appraisal of the HIV/AIDS Hypothesis.

The group, founded in 1991, has attracted the support of more than 2,000 scientists and doctors, many of them with impressive academic credentials. Still, it is widely regarded by the medical establishment as a fringe organization, touting a view that is dangerous to patients.

Mr. Rasnick says there is "no evidence" in the vast medical literature to show solidly that HIV causes AIDS. There are only "assertions," he says.

AIDS is defined as a breakdown in the body's immune system; its victims die of diseases and infections the body can no longer fight, such as cancer or pneumonia. Since 1984, the most widely accepted theory is that the HIV virus is the agent that causes the immune system's disintegration.

But the dissidents say HIV is probably a harmless particle that may have been in some families' genes for generations. They contend AIDS is simply a label applied to a number of diseases that have always existed, such as cancer and pneumonia.

"AIDS is not contagious, it's not caused by HIV and it's not spread by sexual transmission," says Mr. Rasnick.

So why hasn't the medical community, after 15 years of research and billions of dollars, admitted it is wrong?

"The biggest hurdle to understanding AIDS and setting the whole thing straight is the magnitude of the embarrassment," says Mr. Rasnick.

"It would take superhuman courage and integrity in order for these folks to now, at such a late date, say, 'Oops, folks. Sorry, we may have made a mistake.' "

In Montreal, Dr. Wainberg is absolutely furious with such talk.

"HIV is unequivocally the cause of AIDS," says Dr. Wainberg, director of the McGill Centre for AIDS.

Furthermore, he notes that pediatric AIDS is now virtually extinct in Canada -- there were two cases last year compared to 39 a decade ago -- thanks to drug cocktails which are given to pregnant women and newborn babies.

The problem, he says, is that if the dissidents are given a platform, people might start believing them.

"There are no shortage of desperate people out there who are willing, in some cases, to be taken advantage of."