October 22, 2015
Tommy arrived at my office for his psychotherapy appointment looking puzzled. He had just come from his physician's office, where he was told he should immediately start HIV medications. Tommy had tested positive for HIV just three weeks earlier and had reluctantly sought psychotherapy at the recommendation of friends. At 27 years old, he was the picture of perfect health, which was reflected in his lab results. Although he had a high viral load, his T-cell count was also very high. When asked if he had any feelings about seroconverting, his response was nonchalant. He reported no concern and stated that he had always felt that becoming HIV-positive was inevitable based on his sexual practices.
In the past, testing positive for HIV meant a dramatically altered life, and a foreshortened one. In the early years of the epidemic, most people died from complications of HIV. Over three decades, various classes of antiretroviral medications have slowly become available that successfully suppress the virus. Despite their effectiveness and easier administration (most newly diagnosed people have a once-a-day regimen), these medications still represent a lifetime commitment to major chemotherapy. While I understand the carefree attitude of people like Tommy and the relative ease of taking a single pill each day, I am concerned that the life-saving benefits we have experienced from the tremendous developments in HIV research cloud the ongoing, significant impact of HIV and antiretroviral medications on the body.
My personal experience with HIV medications was entirely different. I received the devastating news by telephone in 1988 after getting tested by a physician friend. I was stunned after hanging up from the brief call. A year earlier I had experienced a terrible case of shingles, which had been a mysterious illness for someone in their late twenties. I discovered that my T-cell count was in the single digits, and I knew starting medication was essential. The only drug available at that time was Retrovir (zidovudine, AZT). Proper dosing was basically guesswork, resulting in administration every six hours, including during the night. Most people, including me, quickly became anemic due to AZT toxicity, which killed many (including my physician) and put me in the hospital for transfusions.
Times have changed, but not entirely. Then, as now, not starting HIV medications was ultimately not an option, although the unknowns were far greater at that time. Then, as now, stigma impacted anyone living with HIV and pills were often taken in secret, laden with shame. Then, as now, the financial burden of medications and various health care disparities resulted in widely variable rates of disease progression and mortality. And then, as now, side effects of the meds created great concern, although the toxicity that kept people close to a bathroom for days on end, or hospitalized them for pancreatitis, or caused them permanent, lifelong conditions such as neuropathy has lessened. HIV medications today are far easier to take and tolerate, but they are not benign.
Today, we struggle with mixed messages in our decades-long HIV "crisis." We certainly want to discourage the devastating fear surrounding HIV, hoping to reduce its potent stigma while conveying that, with early detection and medical intervention, it no longer needs to be a death sentence. On the other hand, we have softened the notion of HIV to the point where people like my client Tommy are overly complacent, resulting in a prolonged epidemic that is fueled by a lack of awareness. Data show that nearly one in five persons with HIV (who are responsible for the majority of transmissions) do not know and probably don't want to know their status. A study by the Kaiser Family Foundation reported that one in four Americans still think sharing household objects can transmit HIV. And people are still dying from both the HIV virus and HIV medications in the form of cardiac, liver or metabolic complications.
I am grateful that I had access to life-saving medications and proud, despite the lifelong conditions that resulted, that I (and many others) lent my body to drug trials so that more lives could be saved. My wish for those who are newly diagnosed is most certainly that they have an easier path, but also an ability to remain vigilant about the virus that remains cloaked and "undetectable" in their bodies.
Taking HIV medications, for now at least, remains a lifelong commitment. Like any significant relationship there are ups and downs, easier times and more difficult ones, and benefits as well as complications. In the following slideshow I walk through seven factors that are useful to consider when starting treatment.
David Fawcett, Ph.D., L.C.S.W., is a substance abuse expert, certified sex therapist and clinical hypnotherapist in private practice in Ft. Lauderdale, Florida. He is the author of Lust, Men, and Meth: A Gay Man's Guide to Sex and Recovery.
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