Statistics On HIV Often Ignore Transgender Women Of Color

Photographed by Megan Madden.
HIV/AIDS was once known solely as a gay disease — it was actually first named GRID (Gay-Related Immune Deficiency). But while we've come a long way in understanding that HIV/AIDS doesn't only target gay men, we're still often ignoring one of the most at-risk populations: Transgender women of color.
The data on queer people of color, particularly queer men, being susceptible to the disease is well documented. But nowhere in those numbers are trans women of color mentioned. As one official reported earlier this week, many transgender patients are not even counted in statistics.
A recent data roundup by Callen-Lorde Community Health Center's director of research and education and infectious disease physician Dr. Asa Radix reiterates that transgender women worldwide "are almost 50 times more likely to be HIV-infected than the general population."
Radix pulled from iPrEx, a study on the HIV prevention drug PrEP and its effectiveness, as well as the 2015 U.S. Transgender Survey (USTS), which found that "the rate of HIV infection among transgender women was 3.4%, which is nearly 10 times the overall rate in the country." That number jumps among trans women of color: "one in five African American trans women (20%) reported being HIV-positive."
So why aren't we counting them? A recent White House statement from President Trump for National HIV Testing Day may shed some light on the issue.
As ThinkProgress reports, President Trump doesn't have a strong track record when it comes to protecting people living with HIV/AIDS. The president actually proposed major cuts to global HIV relief funding, despite claiming in Tuesday's statement that his administration "is determined to ... continue supporting domestic and global health programs that prioritize testing and treatment for HIV/AIDS."
In fact, six people resigned from the Presidential Advisory Council on HIV/AIDS (PACHA) in protest just a few weeks ago, citing the POTUS's total lack of attention to HIV/AIDS policy concerns — especially surrounding the healthcare bill's cuts to Medicaid, which helps over 40% of HIV patients get care — as the reason they left.
Trump's National HIV Testing Day statement rattles off statistics about the virus and obligatorily urges people to get tested — but fails, miserably, to acknowledge the populations most vulnerable to HIV infection, or mention a single method of prevention. When this is the rhetoric surrounding National HIV Testing Day, should we really be that shocked that most Americans are unaware of the risk transgender and gender non-conforming people of color face?
Not only are Black trans women and non-binary people the most at-risk demographic for infection, but, as the study shows, they also have the least amount of access to PrEP — a drug meant to help prevent HIV contraction. Due to infrastructural barriers like homelessness, depression, substance abuse, and a misconception that PrEP will interact negatively with their hormones (it won't), trans women aren't able to gain access to the HIV prevention they need.
And if they can get to a doctor, according to the USTS, at least one third of them experience verbal or physical harassment at the hands of health care providers, most of whom are not trained in how to meet trans health needs. As a result, many trans people avoid healthcare services completely.
What's more, between the drug itself, testing, and office visits, PrEP costs more than $1,200 a month — hardly an accessible price — and given that trans people often have ID or insurance cards that don't match their current name and presentation, they are often denied care (changing your name requires a court order in a lot of jurisdictions, which piles on more costs).
Part of the problem is that the Center for Disease Control and Prevention (CDC) doesn't prioritize trans women as an at-risk population. "Transgender people are often neglected in public health campaigns," Dr. Radix says. "Educational campaigns and materials need to be redesigned to ensure these are trans-inclusive, not only in words but in images that resonate with TGNB (transgender and non binary) people. Future studies on PrEP implementation and trials evaluating new agents need to include TGNB people to ensure questions on efficacy, tissue concentrations, and drug-drug interactions are properly addressed."
The study showed that, for the few transgender women who had consistent access to proper dosage, PrEP can be very effective at preventing infection. The problem remains turning that few into many. Dr. Radix calls for safer health environments, patient registration under their correct names (not those listed on their birth certificates), and correct pronoun usage by health staff as a few ways to give trans people better access to the HIV-preventing drug.
Unfortunately, a change this drastic could still be far off and the POTUS's proposed healthcare cuts could actually backtrack on any progress that has been made, keeping trans women of color the most at risk. The least we can do is acknowledge their struggle.
Read these stories next:

More from Trends

R29 Original Series