Thursday, June 23, 2011

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.  (   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.


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.

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