The New Normal of HIV in the Queer Community

CHICAGO — The grand ballroom in the Chicago Hilton has played host to many moments in American history — as the elevator trivia screens reminded everyone. But changing the commitment to the fight against HIV by the LGBTQ community cannot be chalked up to one of those historical moments.
On Saturday, Jan. 23, The LGBTQ Task Force and Gilead Sciences sponsored a plenary lunch, called "AIDS: Mind the Gap," as part of the Task Force's Creating Change conference. While men who have sex with men and transwomen are significantly overburdened with this infection — particularly people of color — the attendance in the ballroom, which had enough space for 2,500, was abysmal.
About half the space was full, and as the program was just getting revved up, and lunch was done, the attendance dwindled even further — to about one quarter full. It's the new normal for HIV and the queer community, the elephant in the community most don't want to be reminded of.
"We are virtually breaking the back of HIV," declared Phil Wilson, president and CEO of the Black AIDS Institute.
But that's not accurate. The tools to break the back of HIV are certainly available — what with PrEP and Treatment as Prevention — but the community, according to government data, simply is not availing itself of the options.
Despite being at least 92 percent effective — and math models say it could be as effective as 99 percent — PrEP, the once a day pill to prevent HIV infection, has been very slow on the uptake. In June 2014 the CDC issued broad new clinical guidance on the prescription of PrEP which ought to have extended the use of the drug to a half million or more men who have sex with men and transgender women. Instead, in November 2015, Gilead (the same company that sponsored the plenary lunch) reported that there were only about 25,000 prescriptions for the drug in the U.S.
And the government data on treatment of HIV is certainly no better. Nationwide, only about 25 percent of people living with HIV are in care, on medications and have their virus controlled. In Michigan, about 58 percent of people living with the virus have it controlled, according to MDHHS stats. That treatment is key not only to the improved health outcomes of people living with HIV, experts argue, but it also dramatically reduces the infectiousness of the person living with HIV.
With such terrible uptake of the two key biomedical prevention options in the U.S., it's hard to find Wilson's claims more than wishful thinking at this point.
But those in attendance on Saturday would not have known how dramatic this failure to use the tools is based on the presentation by Wilson, Cecilia Chung of the Transgender Law Center and Sharon Lettman-Hicks of the National Black Justice Coalition. Nor would a casual observer be aware of just how much of a crisis the HIV epidemic has become — again — among MSM and transwomen, particularly young MSM and transwomen of color.
Nowhere in the presentation were attendees told of the terrifying statistical analysis released several years ago by the CDC which showed the 20-year-old cohort of MSM had an overall HIV positivity rate of 10 percent; black MSM in that cohort had a 20 percent positivity rate. At current transmission rates, half of all MSM in that cohort will be infected in 30 years, and 70 percent of black MSM will be infected.
Dr. Leo Moore, a doctor from Los Angeles, also presented at the plenary — and he explained both PrEP and PEP (that's post-exposure prophylaxis, which is the use of anti-HIV drugs to prevent infection after an exposure) — but there was no call to action. There was no mention of the dismal prescription rates for PrEP or the lack of knowledge of clinicians on the interventions.
In fact, despite decades of experience in the fight against HIV being represented on the stage, there was barely a whisper of actual call to action. The closest came from Chung, a transwoman of color from San Francisco and a powerful advocate on HIV issues. She highlighted the failure by health officials to truly calculate the trans HIV crisis with accurate data, and presented estimates that show transwomen are 49 times more likely to be infected with the virus.
"Ask any government agency if they are collecting data on the transgender community," she said. "If they aren't, ask them why not."
Curtis Lipscomb, executive director of LGBT Detroit, was in attendance at the entire plenary. He said the information provided was good and presented in a way to reach a younger audience, but noted attendance was low for a variety of reasons.
"For those living with HIV, they may not want to be reminded," he said. "For those who are not, they may not think HIV is an issue for them. But at the end of the day, to get young people in the room, you have to make the presentation sexy."
This plenary was anything but, and sadly, resulted in a failure to come away with a real commitment to pick up the tools now available in the arsenal of prevention and care and find a way to end the epidemic.