National Post

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Tuesday, September 07, 1999

For many HIV-positive mothers, it comes down to fight or flight
Growing numbers going to court or hiding infected children to avoid enforced AIDS treatment
Mark Kennedy
Southam News

OTTAWA - A growing number of HIV-positive mothers across North America are going into hiding as part of an "underground railroad" to avoid having their children treated with anti-AIDS drugs, including Canadian women who flee to the U.S. to stay beyond the reach of doctors and social workers.

"We think this is going to steamroller," says Deanne Collie, executive director of the International Coalition for Medical Justice, a U.S. patient advocacy group that provides legal defence for HIV-positive mothers.

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 said her office is being swamped with calls from women seeking help and that there is an "underground railroad" of women constantly crossing borders to stay ahead of child-custody officials.

Some HIV-positive mothers have chosen to go to court to prevent doctors from giving their children the cocktail of drugs that keep the virus in check.

In Montreal, 37-year-old Sophie Brassard is battling youth-protection authorities to regain custody of her two children, one of whom is a seven-year-old who doctors want to treat for HIV.

In 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 cases may be part of a larger groundswell.

Ms. Collie said her group is already involved in nine court cases in the U.S. and has been contacted by 60 women seeking legal help to bring their case to court.

The trend is infuriating leading AIDS doctors and researchers, who argue that HIV-positive mothers are being taken advantage of by "fringe people" who do not believe the virus does not cause AIDS.

A group of dissident scientists has maintained for years that HIV is not the cause of AIDS and there's no point in taking the drugs, because the side-effects are so severe that they pose a greater risk to the patient than HIV.

Dr. Mark Wainberg, president of the International AIDS Society, says the dissidents are trying to "make themselves out to be more important than they are."

But their message appears to be 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.

"HIV is unequivocally the cause of AIDS," said Dr. Wainberg, noting that paediatric AIDS is now virtually extinct in Canada thanks to drug cocktails that are given to pregnant women and newborn babies.

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

Carl Strygg, spokesman for the Toronto chapter of an AIDS support group, said he doesn't believe the merits of HIV drug therapies have been proven. And he said a number of Canadian women with HIV have gone into hiding to prevent their children from being treated.

"HIV-positive women are being persecuted," said Mr. Strygg.

"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."

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