Is lying to an intolerant doctor about your treatments ever justifiable?
Several of my closest friends lie to their doctors. They're not alone: Across the country, many rational, intelligent PWAs are claiming to still be taking prescribed drug regimens they've actually changed or discontinued. Others, using various alternative therapies-marijuana to reduce pain, prayer to treat depression or colloidal silver to control bacterial infections-are withholding that important information from their physicians. For years, there's been an unsettling patient-doctor rift between self-directed HIV positive people open to unconventional options and some paternalistic practitioners insistent on dogmatic standards of care. Now, the evidence of protease inhibitors' antiviral power has only reinforced those doctors' adamance.
Throughout his five-year battle with AIDS, Steven Kovacev of Provincetown, Massachusetts has forged his own alternative-and-conventional approach to a host of life-threatening infections. "My vehicle for survival has been an empowering search for less-toxic treatments-everything from herbs and antioxidants to amino acids and natural antivirals. I trust experimenting on myself more than I trust the medical establishment," he says.
Last spring, Kovacev reluctantly gave in to his doctor's pressure and began a three-drug protease combo. Only months later did her discover that his acquiescence had been based on his own misreading of his viral-load count as 240,000. At that point, "I stopped the drugs completely," he says. Although he respects his doctor's expertise on drugs, Kovacev understands that he himself is ultimately responsible for his health care. For better or worse, he lied when he told his HIV specialist that he was continuing to take the prescribed drugs. "I didn't want to get into any confrontations. It's too stressful to educate someone who thinks they have all the answers. My well-being is more important than explaining treatment decisions to my doctor," Kovacev says.
The problem stems from a generation of doctors trained in "cookbook" medicine. Kovacev believes some doctors are too busy or too interested in personal power to form true partnerships with their patients. "The cookbook, med-school mentality is often about ego," he says, "about who's controlling your medications and regimens."
For PWAs facing such intransigence, Jeff Getty, the baboon bone marrow recipient and ACT UP/Golden Gate activist, offers strong medicine: "We must not be afraid to make the wrong decisions. If your doctor won't play ball, get rid of him or her." Getty's challenge may be disquieting, but it's right on target. The burden is on us to risk being wrong.
Nonetheless, the often lonely journey to a comprehensive, PWA-directed healing strategy often benefits from an alliance with a physician. The key is finding doctors who will support, or at least not oppose, the "aggressive pursuit of Western and alternative therapy options," as Getty puts it. Fortunately, some physicians seek to build cooperative relationships. Houston AIDS specialist Patricia Salvato, MD, says she is among the growing ranks of HIV doctors who seek patient input and do personal research to develop "individualized treatment programs by integrating natural and mainstream therapies."
But many PWAs don't have access to these medical "integrationists." Salvato observes: "The majority of physicians don't have a clue when it comes to recommending nutritional or herbal therapies." And no one is expert on all HIV treatments.
So we need to create our own consultant teams based on our particular needs for, and access to, medical advice. Some of us can enlist professionals such as nutritionists, herbalists, mainstream doctors and spiritual teachers. And many of us can consult sources that cost little or nothing-including buyers clubs, newsletters, the Internet and experienced PWAs. But while others can help us, ultimately we must develop our own strategies.
In 1997, there may be many reasons to lie to your doctor, but the only justification I can think of is for those who've exhausted their options to obtain a new therapy through a treatment trial or compassionate-use program. Those cases aside, if we can't be honest with our doctors, we need to reasses the situation. After all, who's in charge? Next time you fill out a form that asks you for your "primary care provider," consider writing simply "myself."