An Interview with David Crowe and Terry Michael

Please check out the podcast, How Positive Are You? An Interview with Director, Jennifer Wolfe ,  to hear about the making of the documentary, "This Child of Mine".

In the interview we discuss the experiences of the families from the movie, and their personal fights to make medical decisions that go against their doctors' orders, as well as my own interests and viewpoints on these issues.

The Case of Eliza Jane, Part 2

After the death of her three-year-old daughter, Christine Maggiore claimed that Eliza Jane was being used as a "crucible" in the war between AIDS dissidents and dogmatists.   Still the question remained.

Was Christine Maggiore In Denial?



Christine Maggiore did, in fact, deny outright the causative link between HIV and AIDS, as do most of the so-called AIDS dissidents.  Certainly this is a literal form of denial.

But to be “in denial” suggests something else, something insidious, psychologically deficient. Or, as one dictionary defines it, a state of mind marked by a refusal or an inability to recognize and deal with a serious personal problem.

This did not describe Christine.

When she first tested positive for HIV, she accepted the death sentence she believed she had been handed without question. She told me, “it washed over me like rancid water, this sense of shame, that I had done something wrong and I was now this dirty person”.  

But she put the shame aside and dove in head first, becoming a public speaker on HIV prevention. It was only later, when she actually had questions, that she began to ask them. Loudly.  And when she couldn’t find answers in the mainstream medical community she looked for them elsewhere, becoming one of the most prolific members of the so-called AIDS dissident movement.

Yes, Christine challenged “well-accepted” theories about AIDS. Many of the greatest scientific advances in history are premised on challenges to existing, well-accepted theories. One may turn out to be right, wrong, brilliant or misguided, but questioning conventional wisdom does not constitute being in denial.

Yes, her point of view was controversial. But not all of her ideas were as “fringe” as one might expect: there were documented cases of false positives and reports of exaggerated AIDS statistics from around the globe. Treatment side effects –short and long term - were often debilitating, difficult to manage or simply unknown. They still are for many.

Yes, for better or worse, AIDS had become a profit-driven industry helmed by pharmaceutical giants (who, by the way, also own most of the infant formula companies and HIV testing kit patents). The wisdom of creating public health policy around studies paid for by Big Pharma has long been debated in the medical community. It is not simply the crazy talk of conspiracy theorists.

And let’s not forget that Christine’s foray into AIDS “denialism” only happened after she retested repeatedly and got different results each time. Who wouldn’t be skeptical?? That experience, coupled with her persistently good health for many years, led her to view AIDS research as dogmatic and flawed – a view based on experience and research, not fear or incompetence.

The trouble is that despite her tireless efforts to have an open dialogue with experts who were unwilling to invite her to the table, Christine began to develop her own strain of dogmatism.

Over the years she refuted nearly every point made by AIDS “mainstreamers” no matter what they said.  Concessions were made in the medical literature regarding treatments, testing and breastfeeding while HIV+.  Research evolved. Guidelines changed. But year after year Christine remained staunch in her belief that the entire HIV/AIDS paradigm – and all of its tenets- was categorically wrong.

Maybe this unwavering resolve becomes necessary when one holds a point of view that is so controversial, so fundamentally divisive. A line is drawn and you must jump to one side or the other and stay there, firmly planted. Us versus Them.

Does this mean Christine was in denial?

I don’t think she was.  But I keep coming back to that night at the hospital, when her daughter Eliza Jane was dying.  ( http://this-child-of-mine.blogspot.com/2011/06/case-of-eliza-jane.html)   As a parent I cannot imagine the fear, the horror, the desperation Christine and Robin must have felt in those final wrenching hours, surrounded by doctors who, in the end, were unable to save their daughter’s life. And yet, there was one crucial fact that Christine later shared with me that I simply could not understand.

Christine did not tell the doctors that she was HIV+. 

When I asked Christine about this some months later, she responded that “she had answered all of the doctors’ questions truthfully”. They had never asked about her HIV status, and she didn’t want to offer that information because her 14+ years of being “in and around this issue” had shown her how “prejudice drives medical diagnostics.”

Five years earlier, when I first began interviewing Christine, this might have made have made some sort of logical sense to me. Now, with two children of my own, it really didn’t answer the question at all.

Why?  

Knowing that your child is about to die, wouldn’t you say anything, do anything, risk anything if there was a shadow of hope that it might help?

Knowing Christine as I did, I know that she would literally walk through fire, or, in her own words, swim through shark infested waters for the sake of her children. Yes, she would do anything. This wasn’t a matter of pride, politics or narcissism, as others have charged. Nor do I think anyone really believes that her sharing that information that night would have suddenly saved EJ's life.

Still, Christine’s decision to keep her HIV status from the doctors, and later the coroner, suggested to me the extent to which her convictions - once rational, researched-based, validated by experience and empiricism - had transformed into something approaching religion. 

It was no longer just a dissident point of view, the ambiguous gray area of AIDS research that demanded attention. It had become a single-minded belief system, held together in the end by faith, in a way that made it impossible for Christine to acknowledge or merely consider another possible truth in the tragedy before her.   

Or even ask the question.

The Case of Eliza Jane, Part 1

In my previous post I wrote that the critics of former AIDS dissident, Christine Maggiore, claimed she was potentially causing the deaths of countless children.  The war came home in the most devastating way possible when Christine's own daughter, Eliza Jane, died at three years old. 

In this two-part article I'll take a closer look at the case of EJ, and share my own experiences in documenting this tragedy and its aftermath.

PART 1: Eliza Jane's Story

 

After the death of her daughter, Christine Maggiore, a vocal activist in the AIDS dissident movement, was called everything from a child murderer to denialist bitch, and, yes, Andrea Yates. 

Bloggers raged that “she had killed her daughter as surely if she had put a gun to her head”.  One sadistic idiot got hold of a picture of Eliza Jane, blacked out her eyes, and posted it to the web with the caption, "See you in Hell, Mommy!"  Another playful quipped, “I'd ask if I'm a horrible person for laughing my ass off when I read this….”  

(Yes, you are.)

Christine accused her anonymous hecklers of using her daughter as a "crucible" in the war between AIDS dissidents and dogmatists.  Nevertheless, the question remained. Was Christine Maggiore in denial about HIV? Did her daughter die because of it?

Amoxicillin or AIDS?

In 2005, Christine Maggiore and Robin Scovill’s three-year-old daughter, Eliza Jane, developed an ear infection. They gave her Amoxicillin, a common antibiotic. Almost immediately EJ began throwing up and experienced trouble breathing. Her condition worsened throughout the day and that night.  EJ was rushed to the hospital.

Christine told me that that at the hospital ER doctors asked her and Robin a series of questions that might help them explain why an otherwise healthy three-year-old child was dying.

The questions ranged from what chemicals and medicines they had at home, to who had access to EJ, exotic pets, The doctors performed various blood tests, chest scans, and x-rays.  They didn't ask Christine if she was HIV+, and Christine didn't tell them that she was. Four hours after arriving at the hospital, Eliza Jane died.  And Christine and Robin still had no answers. 

They didn't get any until months later, Christine recalled, when someone “tipped off” the Los Angeles coroner’s department as to who she was.  At that point,  Robin said, “a light bulb when off in their heads.”  New tests were performed and the official cause of death determined: Pneumocystis Carinii Pneumonia, or PCP.

An AIDS-defining condition.

Fallout

The coroner’s report was released to the media before the Christine and Robin had even received a copy. The Los Angeles Times published the front page article, “A Mother’s Denial, A Daughter’s Death” (http://articles.latimes.com/2005/sep/24/local/me-eliza24),  and almost overnight Christine went from grieving mother to villainous AIDS denialist who had gotten what she deserved. 

Christine and Robin were investigated for negligent homicide. Detectives interviewed their friends, neighbors, their pediatricians, and teachers at their son, Charlie’s, school. Fearing that they might lose custody of Charlie, Christine and Robin proactively tested him (and Robin) repeatedly for HIV. All tests came back negative. 

The homicide case was eventually dropped when investigators believed that it would be difficult to prove medical negligence since Christine and Robin clearly had sought regular medical advice from numerous doctors for both of their children since birth.  

Meanwhile Christine and Robin pursued their own theory that it was a fatal reaction to the antibiotic that had taken Eliza Jane's life, not AIDS.  During one of our last interviews, they tried to describe to me what day to day life was like in these darkest of moments:

Robin: Losing EJ…there’s a – it’s like a bomb dropped in the middle of our family---

Christine: --and it goes off every day. It just doesn’t stop.

Robin: There’s no chance to even clean it up right now. We’re just sort of dealing with our ringing ears and the debris of that. And there’s just a hole. That I can’t imagine will ever be filled again.

There was no time to grieve. No time to sit quietly and remember the daughter they had lost. Only a fight that was long from over. 

Coming up in Part 2: Was Christine Maggiore in denial about HIV? 

Families Underground

                  

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’s Story

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 mychildmychoice@gmail.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.