My Struggle to Take Anti-H.I.V. Medicine
By DARYL HANNAHSEPT. 21, 2017
I am a 30-something African-American gay man in New York. H.I.V. is constantly on my mind. Not so much my H.I.V.-negative status. Rather, even though I watched my parents die of AIDS when I was young, I still struggle with whether I should take the drug Truvada, a pre-exposure prophylaxis (PrEP) that can protect almost completely against H.I.V.
My father was convicted of manslaughter and sent to prison in 1989, where he contracted H.I.V. No one in my family is exactly sure how. In 1991, six months after he returned home, he died. Less than two years later, my mother also died. I was only 7.
I don’t remember my parents in any great detail, but I do remember that people in our rural South Carolina community ostracized my sister and me once they learned our parents were H.I.V. positive. One parent even transferred her daughter out of my second-grade class.
As was true in the early 1990s when my parents died from AIDS, gay black men still account for the highest percentage of new H.I.V. cases in the country. According to the Centers for Disease Control and Prevention, black people made up 45 percent of all H.I.V. diagnoses in 2015, though they were only 12 percent of the population. If current transmission rates persist, half of gay and bisexual African-American men will become infected with the virus during their lifetime.
It’s unfortunate, but not surprising, that this problem is particularly acute in the South. Racism at doctors’ offices, poverty and a lack of access to health care play a role in these high infection rates.
These factors have also stymied efforts to market PrEP more successfully to the African-American community. Only 10 percent of all the prescriptions for PrEP have been filled by black people, while white people account for 74 percent.
I was 27 when I first worked up the nerve to ask my doctor for a PrEP prescription. I was there for my fifth annual H.I.V. test, and I’ll never forget the look of disgust on her face as she told me why I wasn’t a candidate for the drug: I didn’t engage in “reckless sex” and I wasn’t a “druggie.” She was white and her tone was so thick with judgment that it made my skin crawl. I quickly dropped the subject.
It would be five years before I would broach the subject with a doctor again, even after I had gotten a new one. He was a gay man of color and he initiated the conversation. Instead of telling me why I wasn’t right for the drug, we spent the time talking about why I felt that I needed it. I had promised my parents that I would take every precaution against H.I.V., so I put enormous pressure on myself to take it. Plus, it let me be extra cautious about my health and my partner’s health. After our conversation, he tested me for H.I.V. and wrote me a prescription.
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I carried the prescription in my pocket every day for three weeks before I worked up the courage to have it filled, and even then I didn’t go to the drugstore right across from my office. I chose one four blocks away because I didn’t want anyone to see me. The very nice pharmacy technician informed me that even with my employer-backed health insurance, my PrEP prescription would cost $175 a month. Too embarrassed to admit that I couldn’t really afford that, I smiled and signed the receipt.
It wasn’t until I got back to my apartment and opened the bottle of pills that reality began to set in. Not only was I committing to a new monthly expense, but I was also signing up to take a pill every day, a lifestyle change that I wasn’t entirely comfortable with.
My first few weeks on PrEP, I felt fine. Every morning at 8 a.m. my cellphone chimed with a reminder for me to take my pill. I even began to develop a subtle sense of pride in knowing that although I was having sex only with my partner, I was upholding my word to my parents.
But as the one-month mark approached, I began to have serious doubts about why I was taking PrEP. After all, I wasn’t having sex with men other than my partner; same for him. We still used condoms, despite having been together for several years.
I recognize that PrEP is effective and agree that it should be available to people who want to take it. But after about a month of taking it off and on, I just stopped. I couldn’t get over the psychological barrier that somehow I was weakening my body by training myself to rely on pills. Instead, my partner and I decided to take the precautions we’re comfortable with.
There are also cultural reasons for why I abandoned the drug. Like many other people from low-income families in the rural South, I didn’t grow up understanding that drugs could prevent sicknesses. The only people who took medicine around me were those who were already ill. Instead, bleach was our anti-pathogenic weapon. And because my parents contracted H.I.V. before our understanding of the virus evolved to what it is today, a hospice nurse bleached everything in our house at least once a day.
As sad and ignorant as that may seem, losing my parents to AIDS has instilled in me a deep skepticism of doctors, medicine and even hospitals. And while this is rooted in my own experience, studies show that blacks still hold deep suspicions about the health care industry and we report higher instances of racial bias at doctors’ offices than other groups. The Tuskegee trials, where federal researchers followed African-American men infected with syphilis and withheld treatment so that they could see the disease take its course, and other racist medical experiments, have left a long shadow.
Retention rates for PrEP are deplorable — one study showed usage in Mississippi dropped by 15 percent over a three-month period (Patel, et al) and it’s clear to me why. I had guilt and carried emotional baggage. I also felt alone in my journey. There was no PrEP community that I could find with which I could share my anxieties, no PrEP “sponsor” to call and discuss my night terrors or fatigue.
To get more people to take the drugs and stay on them, the medical community needs to acknowledge the variety of experiences that contribute to dropout rates. It ought to create better support systems for people who are just starting to take the drug, like regular check-ins with nurses and easily accessible communication platforms so that people can connect with one another and discuss their experiences. It’s not that we’re all just irresponsible, as I recently heard a table of white L.G.B.T. activists bemoan. Some of us are also dealing with deep trauma. We can’t lose sight of that.
Daryl Hannah is working on a collection of short stories about growing up in the South during the early years of the AIDS epidemic.
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A version of this op-ed appears in print on September 24, 2017, on Page SR7 of the New York edition with the headline: Why Anti-H.I.V. Medicine Isn’t for Me. Today’s Paper|Subscribe