Sophie Brassard, a 37-year-old single mother in Canada, is scheduled to fight in a Montreal court today for the custody of her two children, 4 and 8. She wants them back. The state wants them placed in permanent foster care. The reason: Brassard, who is HIV positive, has refused her doctor's advice to treat her children, both of them HIV positive, with the drug AZT. She believes it will kill them.
Though the Canadian government has not formally charged Brassard with any crime, it removed the children from her care in July, when she was detained at the Montreal airport while trying to leave the country with her kids. In the course of her custody hearing, the court is expected to decide, for the first time in Canada, whether the state has the power to mandate medical care.
The decision, even though it will come from a Canadian court, is expected to have significant impact in the U.S., where parents who withhold medical treatment from their children, often for religious reasons, have found themselves in court with no legal precedent to guide their arguments. Their opponents struggle in the same void, as decisions tend to vacillate on a state-by-state, case-by-case basis.
Dr. Seth Asser, an associate clinical professor of pediatrics at the University of California at San Diego's School of Medicine, finds the overall emphasis of court rulings in the United States to be "consistent" with his opinion. As a board member of Children's Healthcare Is a Legal Duty (CHILD), his mission, and that of the group, is to "protect children from abusive religious and cultural practices."
"Sometimes the parents have religious reasons, or an adherence to folk medicine to prevent medical care for diseases with viable treatments," says Asser. "But when the reasons are capricious, like wanting to use herbs that havent been scientifically tested, the courts generally say that the parents are free to make martyrs of themselves, but not their children."
But more and more often, these battles specifically involve HIV and treatment with antiretroviral drugs -- in utero, in breastfeeding and later in a child's life. Religion, folklore and herbs don't often figure into these arguments and the outcomes have been as unpredictable as the effects of the disease and its still-controversial treatments.
In a custody hearing held in April in Eugene, Oregon, an HIV-positive mother was told by the court that she could not breastfeed her son, who is HIV negative. She was allowed to keep the baby in her home, but he is technically in the states custody. In a mildly farcical arrangement, a social worker visits once a week to make sure the child is not breastfed.
Meanwhile, in a case last year that is likely to be cited in Brassard's hearing, Valerie Emerson, a mother in Bangor, Maine, won the right to withhold AZT from her second child after her firstborn, who had been on the drug, died just before her 4th birthday. Though no formal ruling was made about whether the drug killed the girl, Emerson believes that it did and she prevailed in the hearing. (Her son, who still has not taken AZT, is currently healthy.)
The relative merits of AZT, a drug developed 30 years ago as a form of chemotherapy and later found to be potentially effective against the spread of AIDS, will be on trial in Brassard's hearing. But so will her rights as a parent of a sick child. The issue of parental prerogative when a child is gravely ill has fueled years of impassioned and confusing debate in Canada and the U.S. In Brassard's hearing, as in every trial that has pitted parents against doctors and child advocates, each side will claim the same motivation -- saving the lives of ailing children.
"Mentally, I was preparing myself to go to my childrens funerals," says Brassard. "There were times when I wanted to kill myself, but then I realized I had to keep fighting, for the sake of their health."
Ridiculous, says Dr. Mark Wainberg, president of the International AIDS Society in Canada and the inventor of antiretroviral drug 3TC. He maintains that Brassard and other "AIDS dissidents" are comparable to Holocaust deniers. They are, he says, "ill-informed, confused individuals who either do not or cannot understand the issues involved."
Brassard, who found out she was HIV positive in 1989, says that she was both healthy and well-informed when she became pregnant in 1992. She was aware that the chance her infant would be HIV positive was roughly 25 percent in a vaginal birth and 10 percent if a Cesarean was performed. She decided to have the baby.
She also wanted to give birth with the assistance of a midwife. But when her sister found out that Sophie was not planning to have a doctor present, she called Youth Protective Services. Brassard was in the middle of labor when five men -- a social worker, a Youth Protective Services administrator, a doctor and two police -- entered her apartment and forced her to go to the hospital.
Immediately after the birth, a pediatrician came into the room and took the baby away from Brassard for its first formula feeding. When Brassard said she wanted to breastfeed, her physician protested; but Brassard was permitted to nurse the baby for a year and a half.
Brassard avoided the first battle -- over breastfeeding -- primarily because her child was already HIV positive. It is generally believed that HIV can be transmitted to an infant through breastfeeding, and mothers who are HIV positive are advised not to nurse. But not all studies have supported this notion. Brassard and her supporters point to the results of a recent South African study, published in the Lancet in August, which concluded that HIV was not necessarily passed through breast milk. Researchers from the Department of Pediatrics and Child Health at the University of Natal hypothesized that the immune factors inherent in breast milk can work to "neutralize" HIV.
When Brassards first child began losing weight at 18 months, her social worker insisted that she take him to a doctor who would prescribe treatment with AZT. But Brassard, who favors homeopathic treatment and believes in self-healing, said no. Ultimately, she compromised with the social worker by taking her son to a homeopathic doctor.
That doctor saw her son once a month for close to a year, but when the child developed a fungus in his mouth, the doctor gave her an ultimatum: Take the child to a specialist or get reported to Youth Protective Services.
Brassard panicked. Firm in her belief that people who are HIV positive can live long, healthy lives without drugs, she was terrified that a doctor's intervention would harm her child. If she stayed in Canada, the doctors would give her son AZT, a drug she believed would kill him. So Brassard bought two tickets to Italy and, without telling anyone where she was going, left the following morning. She went underground.
Despite its widespread use and apparent efficacy against the symptoms of AIDS, AZT has remained a controversial treatment that is routinely rejected by those who choose alternative treatments for AIDS. They cite a 1993 Concorde study, the results of which were subsequently printed in the Lancet, in which patients who took AZT died sooner than those who took a placebo. They also point out that AZT is acknowledged, even by doctors who prescribe it, as having side effects that include anemia, muscle wasting, hair loss, neuropathy, dementia, nausea, diarrhea and other digestive problems.
Perhaps the strongest statement against AZT comes from Dr. David Rasnick, a developer of protease inhibitors at the University of California at Berkeley and the president of the Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis.
Asked about the Brassard case he said, "AZT is a DNA-chain terminator. That means it terminates a person's DNA, which stops cell division, which stops growth and, eventually, all life. If her children are forced to take the drug," he says, "they wont last two years."
But proponents of AZT say the drug has become more effective in "cocktails" mixed with protease inhibitors. David Winslow, who represented the Maine Department of Human Services in the case of Valerie Emerson, told the court that AZT had reduced AIDS deaths nationwide by 47 percent last year.
And in Toronto, Dr. Philip Berger unequivocally recommends antiretroviral drug treatment for patients who are HIV positive, especially the young. "If the drugs are given to a baby within hours of birth, the odds of it developing HIV can be significantly reduced," he says. "The odds are even better if the mother also takes the drugs during pregnancy."
Doctors have to be the absolute custodians of children's care, he says. "Once the child is born," he says, "I think the state has a duty to protect the child from any disease for which a parent is refusing treatment where the benefits are clear."
Brassard says she was aware of all the arguments when she left the country. Using the Internet for much of her research, she found organizations like H.E.A.L. and Alive and Well, two support groups dedicated to sharing information about living healthy, HIV positive lifestyles. She also read articles by Dr. Kary Mullis, a Nobel Prize winner, for his discovery of the polymerase chain reaction, and Dr. Peter Duesberg, who was the first man to map the genetic structure of retroviruses. Both men actively challenge the common thinking that drugs are the best way to treat HIV and AIDS.
"I thought I was the only sane person in an insane world," she says. "But then I found people with Ph.D.s who believed in the same things I did."
Brassard and her son lived outside Rome for two years. She worked odd jobs and says that her 2-year-old boy was happy and healthy. She took him to a doctor only once during that time, for a routine check-up; Brassard herself visited a homeopath as needed. She fell in love and became pregnant again, this time buoyed by the fact that she and her son were both maintaining good health. Eventually, however, her relationship became violent, and she moved back to Canada in 1996.
Brassards second child was born at home under the supervision of a midwife. He tested positive for HIV. Brassard breastfed him and things went smoothly for the next year. After a brief stay in Mexico, to escape the scrutiny of Youth Protective Services, she returned to Canada. Shortly after she arrived, she was turned in to Youth Protective Services by a neighbor. Brassard and her children took mandatory blood tests and her doctor again urged her to put the children on the antiretroviral drugs.
Brassard refused to give her children the drugs and took them back to Italy, hoping to resurrect the relationship with her second child's father. It didn't work out and she returned to Canada in 1998. This time, Brassards father called Youth Protective Services, after her eldest son, who was 7, developed an ear infection.
The child was hospitalized and put on antibiotics for the first time in his life. The pressure on Brassard from doctors, nurses and her social worker to put both children on drug cocktails, which included AZT, increased. So Brassard made a decision to leave the country for good.
Slowly and discreetly, she sold all of her possessions and sublet her apartment, making sure that her father would not find out. The buyers of her belongings came to collect their purchases the night before Brassard was supposed to depart for Italy. The next day, her apartment was completely empty.
Friends had agreed to help Brassard find schools for her kids in Italy and a job that could support all of them. The trio made it to the airport and past the metal detectors without incident. "I remember thinking, whew, we made it," Brassard says. They were approaching the boarding area when a police officer asked for her ticket. She was detained there until an emergency court could be assembled. Her two children were remanded into the custody of Brassards parents.
Brassard went online and found the International Coalition for Medical Justice, a nonprofit organization created to support victims rights in cases where they believe coercive medical treatments have been employed. They helped her to find and pay for a lawyer.
Meanwhile, Brassards older child developed pneumonia. He was hospitalized and given intravenous antibiotics, but his condition worsened. The doctors prescribed AZT, 3TC and a protease inhibitor. Brassards parents raised their concern that the drugs would be too strong for a young child. Brassards mother, who is a nurse, thought her opinion would carry weight with the medical staff. But in October, after a flurry of court activity, the children were removed from their grandparents care because they, too, had refused to allow the antiretroviral treatment.
Both children, now in foster care, are being treated with a drug cocktail, which includes AZT. Brassard has been allowed one supervised visit each week, in the social workers office. She is not permitted to speak with the children by phone anymore, since the social worker overheard her telling one of them to flush the medication down the toilet. (He had complained to his mother that he kept throwing up when he took the medicine, only to be given another dose.) Brassard does not know where the children live. She says that during visits, they tell her they want to come home.
Since she was caught at the airport, Brassard has lost her apartment and her job. At the moment she lives on public support in Montreal while she takes college classes in international commerce at College LaSalle. She says, "The horror of this is that my kids are now on one of the most toxic drugs in existence. I have to get them back before any permanent damage is done."