Don't Tell, Don't Ask

A teenager born with HIV was never told of her status until it was too late. How this happened, and why, is now a matter of national debate.

"There is a procedure of handling this through the courts," Hartog continues. "Regardless of whether there's arguable neglect, if a minor wants to start deciding about his health, all the minor has to do is say, “Doctor, I'm thinking about having sex.' The minor then becomes emancipated and becomes protected under 384.30. How much more can Florida do? Emancipate them earlier under other circumstances? When does parental decisionmaking end? How can you draw that line?"

Although Leslie Ann Schor, Jackson's HIV/AIDS educator, may have supported Hartog's reading of the law, in practice she has a very different view. When it comes to sex, Schor says, how you got HIV is less important than knowing you have it and that you can spread it to others. "Any teenager who has the comprehension to understand should be given the opportunity to make the decision to have safe sex," Schor opines.

Child-welfare attorney Mishael disagrees with Hartog's reading of law. "Florida law does not support what he's saying," he scoffs. "Besides, Florida law cannot overrule federal law. Those children had a constitutional right to know." According to Mishael federal Medicaid laws ensure that minors under age 21 can seek medical counseling and treatment independent of their parents. But for Hartog any other interpretation would mean trouble for Jackson or another provider. "The risk that the provider would be running is that they're going to be sued by the parent for breach of confidentiality," Hartog argues. Adds Armstrong: "This is a nationwide problem. There are a lot of cases right on the verge of being classified as medical neglect ... not just at this hospital but in hospitals across the nation."

In a highly publicized case in Maine, Valerie Emerson decided against giving her son Nikolas cocktails to treat HIV. Emerson already had lost a daughter to AIDS. The state's child welfare agency fought to terminate her parental rights, but in the end Maine's Supreme Court sided with the mother. Asking the state to step in, Armstrong explains, is the last thing a hospital will do in reaction to a case in which a parent decides not to have a child treated. "Our business is not to turn families in to the state," attests Ana Garcia, a UM social worker.

But Leonard Jones, director of Project Smile, a foster care program for HIV- and AIDS-infected children that contracts with the DCF, believes the framework is in place. "If a child wants to be treated and a parent refuses treatment, then DCF would step in and authorize it," Jones says. "This is not the only case we get that mothers have not been compliant with doctors."

Charles Auslander, the DCF's district administrator, contends physicians should have called in such a case upon suspecting medical neglect. "They had the obligation to at least do that," he insists. "I don't think there's a lack of clarity on when to call in a case."

Thanks to advanced treatment, a generation of HIV-infected children born in the mid- to late Eighties is fast approaching adulthood. Many may want to become sexually active, and so the issue of public health is of even greater concern for some AIDS advocates. The problem with Jackson's policy, says Hector Torres, coordinator for Care Resource's Youth Network (an outreach program that works with HIV-positive teenagers), is that it ignores a second generation of HIV-infected people who contracted the virus at a very young age, obviously not through sexual contact. "Those adolescents need to be aware that they are infected and that they can infect others," Torres says. "AIDS has been around for twenty years now. Things are different, and we have to adapt and grow. We cannot stick to old rules."

Florida legislators wrote the HIV superconfidentiality law at the height of the AIDS epidemic. It was pushed by gay men to protect them from discrimination. "Now we're finding out that the protection runs head on into the rights of another person," says Dr. Daniel Armstrong. "The majority of people in the health care environment and well-informed parents are going to say, “Yes, children should know about their diagnosis.' There's so much evidence that points to the benefits. The legal conflict is that the rights of one person may go against the rights of another."

Dominique and Jonathan's situation differs from Maine's Emerson case in that cultural factors played a dominant role in their mother's decisionmaking. "There were times when it wasn't clear-cut if the mother was acting out of negligence," observes a Jackson employee. "We cannot fit our American version of what is right into the world view of someone who is not from here."

The American Academy of Pediatrics supports full disclosure to minors no matter how they contract the virus. Once a child is emotionally prepared, they have the right to be partners in their own care, says Dr. Mark Kline, chairman of the AAP's Committee on Pediatric AIDS. "They can't do that not knowing their own diagnosis," he says. Most hospitals around the nation, Kline explains, go to great lengths in trying to ensure the AAP guidelines are met. "Pretty much every pediatrician would agree that what is contained in that statement is desirable." Even if the parent could not be convinced of the benefits, Kline adds, the AAP still supports disclosing the diagnosis to adolescents. "Why should the legal guardian have veto power over that adolescent's right to know? I can't imagine why the hospital would bow to the parents. I've never encountered this situation, not with a child that age. They have a right to know."

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