a SLACK Incorporated newspaper
October 1998
BANGOR, Maine - A mother who refused to give her HIV-infected son cocktail therapy because she feared the side effects won her right in court to refuse treatment.
A Maine superior court upheld the right of Valerie Emerson 27, to retain custody of her 4-year-old child and make all the medical decisions regarding his care. Her son Nikolas was diagnosed as HIV-positive shortly after his birth. Judge Douglas Clapp found no supporting evidence that the boy's health was put in danger from his mother denying him drug therapy.
The state sought to remove the child from the home because of the mother's refusal to treat her child.
According to the decision, Clapp also believed that the drug regimens being suggested for controlling Nikolas's HIV were still "experimental" and did not necessarily guarantee the boy's survival. The judge said that even though AIDS experts had found the potent combination therapies to be helpful in stemming the virus in some children, he said they could be wrong. The state said it had no plans to appeal the decision.
"We respect the judge's ruling, which leaves the decisions for medical treatment with the mother and child's [doctor]," said David Winslow, director for the Office of Legislative and Public Affairs for the Maine Department of Human Services, which took the mother to court.
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Emerson said her fear of AIDS drugs came from watching her 3-year-old daughter Tia go through an agonizing death after being placed on AZT (zidovudine, Retrovir, Glaxo Wellcome) treatment in 1996. She died of AIDS-related pneumonia just days before her fourth birthday.
Emerson has had HIV for several years and has stopped taking her medication, as well; she has two other children who are virus-free. After researching on the Internet and talking with several doctors, Emerson came away with a lot of unanswered questions regarding combination therapy for children, and decided to stop her son's therapy. Without the drugs, Emerson testified that her son is in relatively good health and showed no signs of active virus. She had followed the doctor's advice initially and put Nikolas on AZT therapy, but watched his health quickly deteriorate. Emerson's family doctor eventually supported her decision.
"Armed with the information [about AIDS treatment], she simply said `I don't think so,'" said Hilary Billings, Emerson's attorney. "She did not want to see him on the drugs anymore."
The decision is a controversial one that is sure to have serious implications in relation to patients' rights vs. the need to treat the virus early and aggressively. In fact, many doctors say the jury is still out as to when patients should actually begin highly active antiretroviral therapy (HAART). To add to the confusion, studies are suggesting that there are problems if treatment is begun too early in one's life, increasing the risk of not only side effects but opportunistic infections and cancers.
"This sort of puts us back into the 1980's when there really was no treatment for the virus and [AIDS] seemed to be a disease that was close to 100% fatal to those who got it," said Robert Janssen, MD, deputy director of the division of HIV/AIDS surveillance and epidemiology branch, Centers for Disease Control and Prevention. "We don't really know if it in fact was but without the drugs HIV/AIDS patients are much more vulnerable to the chronic damage the virus can wreak on their immune systems."
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