"Don't waste your precious money on those high-dose vitamins. They're nothing but quackery."
"I'm gonna stick with my decision. I only made it after checking with two nutritionists, a few nutrition books, an AIDS newsletter and several friends from my buyers club."
Every day, in hundreds of households, arguments like this occur between people with HIV choosing alternative treatments and their families, lovers or friends. These back-and-forths are especially painful for those living with the virus because they encapsulate everything that's wrong with our society's approach to health care. Pharmaceutically driven conventional medicine, and the godlike status of the (usually) men in white coats, combine with the greed and exaggerations of some alternative practitioners and supplement sellers to form a deadly brew. The result: Little research to separate good alternatives from bad, and anti-alternative propaganda that takes in loved ones of PWAs.
The latest venue for this argument -- or more precisely, one side of it -- is a book released last October, The Gravest Show on Earth: America in the Age of AIDS, by Elinor Burkett (Houghton Mifflin). In the book, Burkett, a Pulitzer Prize-nominated former Miami Herald reporter (and POZ contributor), makes a sweeping indictment of almost every institution involved in AIDS. While some of her targets are deserving, Burkett has the tendency to toss out babies with their bathwater. The alternative medicine industry is Exhibit A.
Of course, not all alternative practitioners have the purest motives; human disaster invites economic exploitation. But as with many alternative-medicine bashers, fine distinctions -- such as between false and exaggerated claims -- seem to elude Burkett. Take one of her examples of "egregious lies": Alacer Corp.'s claim on the label of its multivitamin drink E-mergen-C that HIV "can be successfully inhibited in its action with approximately 12 grams of vitamin C daily." This apparently refers to very real research which found that, in test tubes, vitamin C can be a potent inhibitor of HIV's reverse transcriptase, the key enzyme for viral replication. Now, while it's misleading to use test tube evidence alone to prove that HIV "can be successfully inhibited" in human bodies (because everything from AZT to Lysol stops HIV in the test tube), mounting clinical experience suggests this vitamin can play an important role in HIV treatment in combination with other nutrients.
Burkett never questions why many such claims remain unproven. She ridicules one remedy-pusher for "accusing the medical research industry of being in cahoots with greedy pharmaceutical companies" -- yet her later chapter on corruption at the National Institutes of Health makes a good case for something close. Rather than "in cahoots," I would say that there is an interlocking web of shared interests -- mutual back-scratching. That web has repeatedly ensnared proposals to study such low-profit unpatentable products as vitamin C.
But the problem posed by Burkett's approach is that it is steeped in disrespect for those seeking to make well-informed health decisions. In a passing reference, she grudgingly concedes that "physicians and nutritionists agree that vitamins and minerals might improve the health of people with AIDS" -- a huge understatement. But she goes on to say, "Gay Americans especially, obsessed with youth and anatomical perfection, became gluttons at the nation's health food trough. AIDS gave them dire motivation to pig out as never before." Besides the gratuitous stereotyping of gay men, the statement stands reality on its head. It is hardly nutrition-minded PWAs -- who often struggle to make painful and difficult changes in long-cherished food preferences and add annoyingly large numbers of nutrient pills to their daily regimen -- who are "gluttons" that "pig out."
Taking a patronizing view, Burkett says "their vulnerability became gullibility." Her evidence? A St. Louis study finding that "people with AIDS were spending an average of $356 a year on vitamins...and other unproven treatments."
With the single word "unproven," Burkett -- like many doctors and so-called helpful friends and relatives of PWAs -- slyly distorts the state of information on these treatments. The implication is "useless," when a more apt description would be "promising but not yet fully researched." Thousands of PWAs have made decisions Burkett attributes to "gullibility" only after careful review of AIDS newsletters and buyers club fact sheets.
Mounting evidence, including the not-to-be-ignored life experience of thousands of PWAs, suggests that nutritional approaches can play a role in extending lifespan. While we wait (and pressure) for the needed research to get definitive answers, let's take a different tack than Burkett and respect the self-empowerment of people with HIV, who, after all, will have to live -- or die -- with the consequences of their decisions.