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Informed Consent?

Summer 2000

A few years ago my friend told me about a woman he knew that did not believe that HIV led to AIDS. She was pregnant at the time and didn't intend to follow the established treatment protocol for herself and later for her newborn child. She did not even intend to have her child tested once he was born. I was astonished. I was incensed. Who was this woman, I thought? Didn't she read the newspapers? Didn't she know the risk to her child if she didn't begin treatment immediately? Whatever her "opinions" were about HIV/AIDS, did she really have the right to impose them on her unborn child?

This was my introduction to the AIDS "dissidents" and, though skeptical, I was curious. One of them told me about a little known situation in which parents were losing custody of their kids for refusing HIV treatment. I decided to try and tell their stories in a documentary, regardless of my own skepticism. It would be a lesson in objectivity.


I started with Kathleen Tysob, an HIV+ woman in Eugene, Oregon who had lost custody of her son because she didn't want to treat him with drugs, and wanted to breast feed him. Naturally, Kathleen and her husband were devastated. They were, in all other ways, exceptional parents. They had been married for over twelve years and had a ten-year-old daughter, Faye. Faye had been breast fed for three years. (Both David and Faye are HIV-negative.) They had only learned of Kathleen's HIV status a few months earlier during a routine battery of prenatal tests. And now, in what should have been a joyful time, they had lost legal custody of their son.

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After talking to Kathleen and hearing her side of the story, I found myself forgetting my initial skepticism and storming up to Eugene with a camera and crew. This time I wanted to know just who these "court officials" and doctors were. How could they so hastily intervene in the Tyson's decision? But when I attended the Tyson's hearing and listened to the doctors, and the representatives from Child Protective Services telling their side of the story, I realized again that this is an issue with many shades of gray. The only thing that is clear is that everyone wants what is best for the child. Figuring out what that is stirs many an emotional debate.

To follow this story further, I went to Maine to meet Valerie Emerson who had been charged with neglect when she refused to enroll her four-year-old son, Nikolas, in a highly active antiretroviral therapy (HAART) protocol study. Valerie, too, had learned she was HIV+ while she was pregnant. Tests confirmed that two of her other children, Tia and Nikolas were also positive. Their pediatrician prescribed AZT for Tia, and for many months Valerie watched her daughter's health deteriorate. Tia's suffering became more and more profound. Tia died eleven months later, just days before her fourth birthday. The official cause of death was attributed to AIDS related complications. This makes little sense to Valerie who knows her daughter was asymptomatic before beginning treatment. Despite her fears about treatment, Valerie agreed to enroll Nikolas in the HAART study. But when Nikolas began down the same painful road as Tia had, Valerie stopped his treatment and ended up in court fighting for custody. The court sided with Valerie.

Most people I've told these stories to agree that it is a tragedy that otherwise decent parents are facing custody battles with their state governments over HIV treatments. But they also question the parents' decisions, and even their sanity. Why, with so many new treatments, fresh hope offered everyday, would parents decline treatment in the first place? Few of the parents I've spoken to doubt that the protocol of AZT and cocktails is effective in stopping transmission of HIV. They simply don't want to be coerced into giving their children drugs whose efficacy may be certain, but whose potentially adverse effects are uncertain.

Kathleen Tyson began taking AZT while pregnant and then stopped: "I was very confused with the idea that a pregnant woman is counseled not even to take aspirin and here I was being prescribed these very potent and powerful toxic drugs." Later she refused treatment for her son because of the absence of research on long-term effects: "Would it hurt my son? Would there be adverse effects showing up in 20 or 30 years? It happens with drugs sometimes." One only has to remember the tragic effects of DES, (where daughters of women who took it got deadly cancers in early adulthood) which didn't appear for a quarter of a century, to know that she's right. It does happen sometimes.

For "Amy" in N.Y., the risk of transmission seemed less threatening than potentially unnecessary treatment with toxic drugs. "If HIV transmits around 25% of the time, what about the other 70-80%? These are powerful drugs being given to a majority of 'at risk' infants when only a minority will be infected in the first place."

Although several women, like Valerie, have successfully pled their cases in court, some like Amy, have finally found doctors to support their decisions, many others have not been so lucky.

Take Sophie Brassard, in Montreal, for example. Her children were taken from her at the airport when she tried to leave the country to avoid legal action for refusing treatment. The court placed them in foster care until her hearing. Then the court awarded permanent custody to her parents.

"Celia Smith" moved to the Dakotas when her doctor threatened to report her to DHS for refusing treatment for her child. She lives under an assumed name, can only work odd jobs for under the table pay and has no idea when, or if, she will ever be able to return home.

The stories of the Tysons, the Emersons and the many others I've discovered since beginning my film, reach far beyond the growing controversy of the HIV/AIDS paradigm, and the efficacy of treatment protocols. Little by little, fear about AIDS has begun to chip away at and has finally striped parents' of informed consent. The DHHS's own government guidelines clearly state that decisions about treatment and whether or not to breast feed ultimately belong to the parents. So, how, and why, do state governments and agencies have the right to remove custody of children when their parents make the decision not to treat? When Amy was told by her doctor that she had to treat her newborn son, that she had no choice, she made a xerox copy of the state law, along with the CDC's federal guidelines, on informed consent and showed it to him. The doctor shrugged and said, "oh, OK. I guess you're right."

Informed consent means more than just telling a parent a few pertinent facts about a treatment. It means giving them all information: benefits, risks, alternative options and even the possible legal consequences of refusing. None of these moms got any such information. Instead they have been bullied, threatened, and reported for second-guessing their doctors. Kathleen Tyson was informed that legal custody was being removed less than 24 hours after giving birth, while she was still in the hospital, recuperating from a difficult C-section. I've spoken to other parents who are afraid to seek medical care at all for fear of what might happen. And with the argument for mandatory HIV testing of all pregnant women heating up around the country, they have reason to fear. While in most cases doctors cannot force treatment outright, the can accuse parents of "neglect" or "intent to harm" and seek removal of parental custody. But "turning parents in," rather than addressing their fears and respecting their decisions case by case doesn't benefit anyone, least of all the child.

I recently spoke to a doctor who testified nearly two years ago on Valerie Emerson's behalf saying that he fervently believed Nikolas should be in treatment, but that it shouldn't be forced. He told me he didn't know what would happen to Nikolas without treatment: "For all I know he's already dead." He's not. He's already surpassed his initial life expectancy by two years and continues to live without symptoms. He will enter the first grade in the fall. In Oregon, Felix Tyson is eighteen months and remains HIV-negative. He lives with his parents but the state has retained legal custody and is in charge of medical decisions for him. Since the Tyson's hearing, a new study published recently in The Lancet, has shown that exclusive breast feeding for at least six months may actually reduce a baby's risk of developing AIDS because of its powerful effect on the immune system. The study was presented to a somewhat dumbfounded audience at the International AIDS Conference in Durban a few weeks ago. Follow-up studies are underway. In Montreal, Sophie Brassard took her children and fled the country. Although some of us are in contact with her, nobody has any idea where in the world she is. If she returns, she will be arrested for kidnapping. Here in California, Celia Smith is tired of going from job to job, always having to look over her shoulder. Now, she just wants to go home.

If you have a story to tell about your experiences with treatment for your children, clinical trials, or breast feeding issues, or if you just want to express your opinion, please email me at jeffa67@hotmail.com.




  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 
See Also
What Did You Expect While You Were Expecting?
HIV/AIDS Resource Center for Women
More Personal Accounts of Becoming Pregnant With HIV

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