Jan. 14, 2009 - Issue #691: The Great Indoors
Different paths deserve same respect
AIDS dissident Christine Maggiore has died, and, predictably and sadly, some AIDS activists are celebrating—not her death exactly, but celebrating a point for their team nonetheless. This isn’t a war though, and premature death, whether from AIDS or AIDS meds refused or AIDS meds used, is a tragedy.
I am not an AIDS dissident. I know that AIDS is inextricably linked to HIV. I know that AIDS kills, but also that HIV doesn’t always lead to AIDS (these people are called long-term nonprogressors). I know that acquired immune deficiency can exist without the presence of the virus, and that there is much about both the syndrome and treatment that remains a mystery. As Zvi Grossman of the University of Tel Aviv puts it, “The pathogenic and physiologic processes leading to AIDS remain a conundrum.”
New York AIDS physician Abigail Zuger, in an essay for the New York Times Science section, writes: “ ... we have patients scattered at every possible point: men and women who cruise on their medications with no problems at all, and those who never stabilize on them and die of AIDS; those who never take them properly and slowly deteriorate and those who never take them properly and still do fine; those who refuse them until it is too late, and those who never need them at all; those who leave AIDS far behind only to die from lung cancer or breast cancer or liver failure, and those few who are killed by the medications themselves.”
We know that the HIV/AIDS debate is officially over. But in September of 2006, the Journal of the American Medical Association reported that, “25 years into the HIV epidemic, a complete understanding of what drives the decay of CD4 cells—the essential event of HIV disease—is still lacking ... the findings presented by Rodriguez et al provide support to those who favor nonvirological mechanisms as the predominant cause of CD4 cell loss ... The sustainability of the current paradigm for the more than 40 million HIV-infected individuals and the more than four million new HIV infections per year is, at best, questionable.”
AIDS drugs extend lives, but they don’t always, and for some, the side effects put an acceptable quality of life out of reach. Some respond so adversely they die from the treatment itself—liver failure from AIDS treatment is a leading cause of death among HIV-positive North Americans.
Choosing a path that deviates from the pharmaceutical one and talking about the unresolved mysteries and contradictions of the disease isn’t a crime. Many HIV-positive people who choose an alternative holistic health route defy all odds and stay well and symptom-free for decades, and if that were my experience, I’d consider my approach a success, just as those who live well on AIDS drugs should consider their approach a success. I’ve talked to HIV-positive people living well—really well—without drugs. They deserve to believe a positive testing isn’t a death sentence. They deserve to live free of drug effects. They deserve to choose what they put into their bodies.
It’s time for research that compares outcomes of those who choose AIDS drugs and those who don’t. And it’s time that choice and discussion become possible without hate instantly becoming the most potent ingredient in the mix.
The vitriol delivered the way of both dissidents and the reporters telling the stories of the dissidents is a crime. Not only is it obviously wrong to shoot the messenger, but it’s wrong to put ideology ahead of being human, wrong to view the death of an AIDS dissident as a victory.
No matter what we still have to learn about the disease, Christine Maggiore deserves to have chosen her own path and to be respected for it. The hate she has suffered, and the hate and pressure her surviving husband and son will suffer, is inexcusable. V
More stories in front »
New comments for this entry have been turned off and any existing ones are hidden. We apologize for any inconvenience.