When doctors and parents disagree on HAART for kids with HIV, "when to start" goes to court
It's the stuff of summer movies: A father flees halfway across the world to keep his daughter safe from government authorities who he believes intend to kill her. Only in this case, the daughter is HIV positive, the father is an alternative health-care practitioner, and the authorities are police and child-welfare officers convinced they're saving the girl's life. The British family, whose names aren't being released, was extradited from Australia in May and returned to Britain, where the girl was made a ward of the court. Whether or not the 3-year-old will receive HAART -- a treatment choice her dad, a reflexologist, vehemently opposes -- was to be decided in a private office on May 10 not by a doctor, but by a High Court justice. (The decision was not made public.) The obvious question: With research on pediatric HIV treatment still in its infancy, is a judge even qualified to script an ending to this thriller?
The U.S. guidelines for pediatric HIV care are far from decisive. While they're clear that kids with symptoms should go on meds, they state that "when to initiate therapy for asymptomatic...children...is less certain." Sharon Nachman, MD, of the State University of New York at Stony Brook, who helped draft the recommendations, explained that they encourage docs to make the critical decision to treat or not case by case, depending on the child's CD4s and viral load and the likelihood of compliance. The calculations are complex: On the one hand, viral loads are typically high in babies born with HIV until age 2, and hitting early, say the guidelines, "could theoretically preserve immune function." On the other hand, liver function is barely developed at that stage, so med dosage must be extremely high, risking toxicities, and complete viral suppression is less common than in adults, risking drug resistance. On top of that, only a few HIV meds come in palatable cherry syrups; the rest are capsules or solutions that the under-5 set is likely to reject. All of this introduces the frightening prospect of a child burning through regimens and facing salvage therapy by age 8. Said Nachman, "I, like others, need to feel that the family is invested in the therapy before starting."
If the parents don't buy in, effective adherence is only a fantasy. In the case of the Brit tot, their disagreement with medical orthodoxy began early on. The girl's dad and mom, who has since died of AIDS, declined to give their newborn the standard preventive six weeks of AZT, and when the child was 4 months old, they left the country to avoid having her tested for HIV.
Pediatric HIV expert Andrew Wiznia, MD, of Jacobi Medical Center in the Bronx, said that HAART saves lives, noting that he's had to attend only one patient funeral in the past three years. The CDC guidelines report that the drugs reduced mortality from 5 percent in 1995 to 1 percent in 1997 for HIV positive kids with symptoms or immune damage. But the studies all compared HAART with dual or monotherapy, leaving parents with no data on survival for kids who delay treatment altogether.
The British case mirrors two others in the U.S. in which parents who disagreed with prevailing HIV-treatment tenets were taken to court. In Eugene, Oregon, Kathleen Tyson, who learned of her HIV status late in her pregnancy, lost custody of her child in 1998 for refusing AZT and breast-feeding him -- a high-risk activity. Though her breast milk and her child tested HIV negative, she was forced to follow doctor's orders, including six weeks of AZT for the infant, before he was allowed to come home.
In Bangor, Maine, HIV positive mother Valerie Emerson had obediently followed treatment guidelines for her daughter Tia, only to watch her die in 1997 while on AZT. When she then decided against treating her 4-year-old son, Nikolas, with HAART in '98, she had to go to court to win the right. In an unusual act of discretion, District Court Judge Douglas Clapp decided that pediatric HIV treatment was a "rapidly evolving art," and that "Maine is in no position to tell [Emerson] in the face of her unique experience that she is wrong...to wait for better and more reliable treatment methods."
Meanwhile, parents and docs are charged with the daunting task of weighing the benefits and risks of meds for these children on a scale that's constantly changing. "There is talk of an initiate therapy-vs.-wait protocol in the PACTG, but it will be a long time before data is available," said Wiznia. It may be that "hit early, hit hard" in babies will soon be as obsolete as monotherapy, and kids, like grownups, will be allowed to wait until their CD4s drop. The jury is still out on that question, but the courts -- where parents lose custody for being treatment conservatives -- are very much in session.