Friday, May 20, 2011
If you didn’t know better, the idea of parents seeking medical freedom having to “go underground” may sound, well, paranoid.
But during interviews for the documentary, This Child of Mine, HIV+ mother and AIDS activist, Christine Maggiore, remembered meeting dozens of parents who were in danger of losing custody of their children simply for being skeptical.
She told me about one mother who had sought out a second opinion about HIV treatment for her child when the drugs had made him ill. Shortly after, at 10:30 at night, seven police officers arrived on her doorstep. They took the boy from his home and placed him in foster care.
In many of these cases Christine helped parents find legal defense, expert witnesses to testify at hearings, and in a few cases, a place to hide out when custody was at stake. She often advised parents to refuse HIV testing, change doctors, move. Her critics – and she had a lot of them – claimed she was in complete and total denial about her own HIV diagnosis, potentially responsible for the deaths of countless children whose parents had been misled by her kindly quackery. Her fans – there were a lot of those too – believed she had saved their kids’ lives.
Christine Maggiore was diagnosed HIV+ in 1992. Rather than lying down, waiting to die, Christine became an activist. She was a volunteer and public speaker for AIDS Project Los Angeles, LA Shanti Foundation, and Women at Risk, where she was a founding board member.
Several years into her diagnosis a doctor suggested she re-test. The results were inconclusive leading Christine to do her own research. She discovered the AIDS “dissidents”, a loosely connected network of scientists, doctors, and citizens from around the world who do not believe that HIV is the cause of AIDS. Christine went on to write a book, What if Everything You Thought You Knew About AIDS Was Wrong? in which she criticized the HIV/AIDS paradigm, the use of unreliable tests, and the efficacy and safety of treatments.
She also went on to get married and have children. She and her husband, Robin, chose not to have their children tested for HIV because “testing them can only confirm or contradict what we already know: our kids are perfectly healthy. So testing them is a bit of a roll of the dice that would lead to nothing but pain, heartache, problems, our house being sold and us on the run.” Christine knew this - she had seen it happen many times.
Paranoid or Prepared?
While I was making my documentary, Christine put me in touch with many families who had rejected medical recommendations for HIV and got into some seriously hot water. Not all of them appear in the movie, but I remember them well. Their stories are hard to forget.
There was Sophie Brassard, a Montreal mother who lost custody of her children after stopping their treatment. Sophie “kidnapped” her children and fled to Morocco where she hid out for two years until her own failing health forced her to return to Canada. She used to email me as "Trixie" with "on the beach" in the subject line. She used this code just in case someone was monitoring my email. Or hers. I'm not sure. But she was scared.
I met “Diana”, an HIV+ mother who was stopped by police and taken to a grocery store to buy formula when doctors were concerned that she planned to breastfeed and turned her in. Her story was surreally comical, like a scene from Brazil, or Monty Python.
I met David and Kathleen Tyson who were turned into DHS for choosing to breast feed their newborn son. Kathleen had tested HIV+ during her seventh of month of pregnancy. After seeing security guards posted at Kathleen's room in the maternity ward, David, in a moment of panic, considered tying bed sheets together to climb down to the street with his family and flee. Four days later they lost legal custody of their son.
I met Valerie Emerson who wound up in court fighting the state of Maine for custody of her son when she didn’t want to enroll him in a drug trial for aggressive HIV treatment. Two weeks before the hearing she had already packed suitcases for her family, just in case.
And I met Christine Maggiore, HIV+, who was anonymously reported to Child Protective Services for breastfeeding her son, Charlie.
In the documentary, Christine recalls that in forty-five minutes before the social worker’s arrival, she and Robin made a quick exit plan that they would execute “upon a certain signal” if necessary. Following the visit from CPS, we see Christine’s panic escalate as she desperately reaches out to friends in far away places that could hide her family if the investigation goes further.
A Thick, Black Line in the Sand
It would be easy to say that parents should have the unconditional right to make choices for their children. That doctors are arrogant. That social workers are too overwrought with caseloads to make careful, thoughtful decisions. It would be easy, perhaps, if the story ended with parents getting their day in court and going home victorious, children in tow. Often this happened. But the story didn’t always stop there.
During the time that I made this movie at least four of the people I interviewed died, reportedly of AIDS related conditions. Two of them were children. One of them was Christine. Another was her daughter. Some might nod their heads smugly and say these parents – especially Christine- got what they deserved. In fact a lot of people did say that and much, much worse.
But before you jump on one side or the other, look closer.
Right or wrong about AIDS, Christine’s fight for families, including her own, illustrates a deep division between parents and doctors that continues to widen across a vast terrain, extending far beyond AIDS borders. When doctors feel a child’s life is in danger they must intervene. With their actions they bring years of study, clinical practice, and experience.
But when parents feel bullied within a system that fails to address their concerns they may draw their own line, and, like Christine once said, simply walk away. It seems to me that there should be - there must be - a middle ground on this terrain. A neutral place where parents can express concern and make decisions, doctors can provide care, and children can stay safe in their homes. Families together. Above ground.
What’s your story?
Have you ever disagreed with your doctor regarding your child’s care? Or are you a doctor who disagreed with your patient's choice? How did you handle it? Please respond here or email me privately at email@example.com. Or just share your thoughts. I welcome controversy and I don’t delete comments.
Coming up next: Some thoughts on Denial in the story of EJ.