“Pride” by Danielle Couture, MD
By Lary Campbell, BSN, RN-BC
In this age of “alternative facts,” it’s hard to tell what’s true and what’s not. Depending on what paper we read, website we visit, or channel we watch, we learn different “truths.” It seems, these days, that we are a nation of individual “truths” regardless of the facts.
Medicine is one area in which the public expects to be told the truth. However, medicine hasn’t always gotten it right. For years, medicine, and specifically psychiatry, regarded gay people like me as mentally ill, conducting electro-shock and aversion therapy to “cure” us. The message was that we were damaged goods that needed to be fixed and the medical community knew what was best.
In the 1970s, I thought I couldn’t be one of those people who needed to be shocked into a cure. When it was time to come out, I was so fearful, I was like a man facing his firing squad.
In 1973, the APA finally dropped homosexuality from its list of mental illnesses, telling many of us what we already knew. From then on, trusting the medical profession to tell me the truth was not something that came easily.
In 1981, the profession mislabeled a new health crisis, AIDS, as GRID, Gay Related Immune Deficiency. Dr. James Curran, spokesperson for the CDC, was quoted saying, “The best evidence against contagion is that no cases have been reported to date outside the homosexual community or in women.” Well, gee, nothing to worry about there!
In 1983, The American Medical Association sent out a news release with the headline “Evidence Suggests Household Contact May Transmit AIDS,” causing widespread panic that needed to be contained.
In the 1980s and ’90s, I cared for people in their 20s and 30s as a nurse on the AIDS unit and learned another “truth” – that AIDS was a death sentence. I wrapped three young bodies a week, on average, with faces both painfully familiar and not, stoically taking them to the morgue.
In 1991, I was summoned to the nurses’ station telephone. My doctor informed me that my antibody test had come back positive. I remember the sounds of every stretcher rattling by, every call-light buzzing, and every cross-conversation overlapping at the nurses’ station becoming muffled, as if someone had slid on my head a pair of sound-canceling headphones as I took in the news.
“Now, it’s my turn,” I thought. Soon I’d be the one looking up from the bed. Cared for. Wrapped. I remember thinking, “Don’t cry. Hold it together. Pretend nothing has changed. You still have a patient assignment to complete.”
As I headed down the hall, I wasn’t going to think about death. It turns out I didn’t need to.
In 2016, I still had normal CD4s and an undetectable viral load without ever having taken a retroviral. I wondered what could be happening. I needed to get to the bottom of this.
Testing revealed that I have protective antigens associated with HIV non-progression, found in less than 1% of people with HIV. Those with these correlates are known as “elite nonprogressors” or “controllers.” My protective antigens are Human Leukocyte Antigens (HLA) b44 and b51. If I had b52, I’d say I was “the bomb.”
In 2018, I am enrolled in two NIH studies to investigate this and replicate it in others. Every four months, apheresis is performed and a unit of my white cells is extracted for study.
Still, I have questions. What are the limits to my non-progression with the protective factors I have? Do I not have to worry about my immunity or should I be extra careful not to tax my immunity and risk setting off progression of HIV/AIDS? I think about this. And feel. Some days I live in fear, some days I live in caution, and some days I live with confidence.
Despite its history of homophobia, I still look to medicine for the truth. It’s a human profession, and therefore, cannot always be trusted to do the right thing. Instead of expecting medicine to get it right, I insist on helping it get there. This is why I teach staff about LGBT healthcare disparities, particularly HIV.
Some of us control HIV without medication, some of us control it with medication, and some of us still die of AIDS. Sometimes truthisindividual. And that’s a fact.
Lary Campbell, BSN, RN-BC works in the psychiatric emergency room at Pennsylvania Hospital and specializes in LGBT healthcare.