Male-to-female transgender women (TGW) are the most affected by the HIV/AIDS epidemic. However, little data have been generated on the efficacy of new HIV prevention technologies in this community, and concerns have been raised regarding the participation of TGW in HIV prevention research. I want to share some reflections, based on my experience planning and organizing community education, recruitment and retention of men who have sex with men (MSM) and TGW in HIV/AIDS research in Peru, Ecuador and the U.S. for the past 14 years. I will also try to provide an explanation of why TGW do not participate in HIV prevention research, and recommendations to improve participation.
We are failing our young, black and Hispanic men who have sex with men (MSM) and transgender women. Each year in the U.S., we see nearly 50,000 new HIV infections. New York City remains the epicenter of the country's epidemic. Black MSM and black women, including transgender people, remain deeply impacted.
No one raised their hand. Their faces conveyed bewilderment, as if the idea had never occurred to them. I was sitting in a circle of men living with HIV, a weekly group I lead where we delve into both the complications and skills inherent with living with the virus. I had just asked them to share what gives them purpose and passion and everyone seemed at a loss.
I saw Steve in clinic a few weeks before his marriage to Marty. They were knee deep in wedding planning. Had they ordered enough irises? Could they squeeze in one more belated RSVP? Would the best man be funny without being too embarrassing? As we chatted, about weddings and then about Steve's medications, I remembered our last several years of clinic visits. Knowing Steve for years now, I've been honored to see him change and grow. And I've grown to like him.
In 2011, when the U.S. Centers for Disease Control and Prevention (CDC) released interim guidance on pre-exposure prophylaxis (PrEP), I was immediately skeptical about the feasibility and pessimistic about the practicality of this intervention. If health care providers won't routinely screen for HIV, how would we convince them to prescribe a prevention pill to healthy people? Furthermore, by embracing this biomedical intervention, I believed the CDC was signaling the eventual abandonment of behavior change interventions. I was deeply disappointed -- until World AIDS Day 2013, when a young, gay man was diagnosed with acute HIV infection at our hospital. His story has forced me to face the reality of PrEP's role as a viable and necessary prevention strategy for people like him.
One of our fellows asked me this AM when I was posting a RRR (Really Rapid Review™) of CROI 2014, and my response was to clear my throat, make some vague excuses, and curse the respiratory viruses that seem as perpetual as the cold weather this year.
"Are you an HIV-positive man who has sex with women? You can have the sex life you want and the family you want," begins a flyer announcing a connections mixer at PRO Men (Positive Reproduction Options for Men), an innovative program of the Bay Area Perinatal AIDS Center (BAPAC) in San Francisco. While reproductive health services have increasingly been available for HIV-positive women, men living with the virus have had far fewer services and support. As one man states in a video produced by the program, "I thought my sex life was over [and that I would] never have a chance of having a family, but that's not the case."
Hepatitis C has been potentially curable for decades, but it's hardly been easy. "I feel like I'm slowly killing myself," said one of my patients, memorably, during week 24 of a planned bazillion-week course of interferon-ribavirin. (Actually it was only 48 weeks, but seemed like a bazillion weeks.)
I was speaking with a British colleague the other day, and she was remarking how jealous she was that we get a Thanksgiving holiday each year. Starting with a long whine (or moan, as they would say) about the pressures, commercialization, cost, and religious aspects of Christmas, she then went on about how perfect Thanksgiving seems from her outsider perspective.
Must say it's in some ways sad to see it go -- in my opinion the nifty work they did correlating genotype results with their database of phenotypes gave the clearest representation of what a genotype actually means. If you didn't want to order both genotype and phenotype simultaneously -- which was expensive and took weeks to come back from the lab -- vircoTYPE was was the most efficient way to get information on complex resistance patterns. Sure, one could quibble about methodology and validation of the test, but it was remarkable indeed to send a genotype and get back results estimating fold-change, upper and lower cut-offs, full and partial activity -- and virus clade, just for kicks.