In 2008, Octavia Lewis was doing her best to take care of her health. After being diagnosed with HIV, the 27-year-old decided to seek treatment at a clinic near her home in Athens, Georgia.
After checking in at the front desk one morning, she waited for her name to be called. Finally, it was her turn, but to her dismay, the office staff called for "Mr. Lewis" to please make his way through the lobby. "I was embarrassed," says Lewis, who is a transgender woman. "I was already on hormone treatment, [and] dressing the way I wanted to be perceived." In front of a room full people, she politely explain that, "Mr." is not the correct title to use.
It's an experience that many transgender people share. Often, the discrimination transgender people face in doctor's offices—which ranges from overt harassment to plain misunderstanding—discourages them from visiting in the first place.
According to a recent estimate, there are at least 1.4 million transgender people living in the United States, and a disproportionately high number are living with HIV, with the CDC noting that transgender people receive a positive HIV diagnosis at testing at a rate than is three times higher than the national average. While there are many factors that put transgender people at risk of HIV—such as higher rates of mental health issues, sex work, substance abuse, and homelessness—expert insight and new research indicates that discrimination from healthcare providers may be one of the driving factors fueling the HIV epidemic in the transgender community.
Thirty-three percent of transgender people have reported negative experiences in a doctor's office such as being assaulted, harassed, or flat-out refused care, according to a 2015 survey that included 27,715 respondents. "Healthcare services in general can be a challenge for transgender people, both logistically, because people's identification documents don't match their gender identity, and also interpersonally, which stems from societal stigma, says Tonia Poteat, assistant professor of epidemiology at Johns Hopkins Bloomberg School of Public Health.
Moreover, approximately 1.4 percent of transgender people are living with HIV. For trans women of color, infection rates are even higher, with one out of every five trans black women testing positive.
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"For many years, [researchers] had a lot of confusion between gay and bisexual men and transgender women who have sex with men," Poteat says. "Because of that conflation, when they try to provide educational materials, they don't provide [materials] that are appropriate."
When AIDS first emerged in the United States in the 1980s, the disease predominantly affected gay and bisexual men. The stigma that these men faced created additional barriers that prevented them from coming forward to seek testing and treatment. Eventually, after years of public activism, doctors and public health experts developed HIV testing and treatment guidelines specifically tailored to the address the needs of gay and bisexual men.
Today, this group is still at high risk for HIV, but there are signs that some of these public health strategies are working. From 2008 to 2014, the number of new HIV infections in this population stabilized overall, according to the CDC. Racial disparities still exist, with an 18 percent decline among white men, a stable rate of infections among black men, and a 20 percent increase among Latino men.
Only recently have researchers begun to gauge disparities in HIV care by evaluating transgender people and gay men as distinct groups, and it's clear that transgender people are worse off in terms of the rates of HIV and access to treatment.
Over the last decade, researchers have developed a comprehensive, step-wise approach to ending the HIV epidemic referred to as the "HIV Care Cascade." The first step is diagnosing everyone with HIV through universal testing. The second step is ensuring that all people with HIV see a doctor consistently, so-called "engagement" in care. The final steps are to ensure HIV positive people start and stay on a cocktail of daily medicine that keeps the virus in check and prevents new infections.
The CDC now recommends that all gay and bisexual men get tested for HIV at least once a year—the first step in the "Care Cascade." According to a recent analysis, the vast majority of gay and bisexual men (62 percent) have reported seeking an HIV test at least once in their lifetime. Meanwhile, a minority of transgender men and women (36 percent) have reported ever seeking an HIV test.
One possible reason for the disparity is that annual testing guidelines for transgender people are not specified in current CDC recommendations. Another reasons is that the stigma transgender people face in society at large can often crop up in clinical settings, even in relatively accommodating spaces like HIV clinics.
"When we go to take HIV tests, for the most part, we don't get that same level of respect that others may receive just because they are not trans," says Lewis, who now leads transgender programming and services at The Hetrick-Martin Institute in New York.
"We are approached as being a statistic ... that we're part of the problem," she says.
Meanwhile, there's evidence that transgender people who have already been diagnosed with HIV are losing contact with their healthcare providers and not adhering to treatment—the later steps in the "Care Cascade."
A 2017 study that compared transgender women to cisgender people of any sexual orientation found that the trans women were significantly less likely to be prescribed HIV medication, and less likely to take that medication every day as required.
"If you put the literature together, you would see the disparities occurring across the spectrum" of care, says Seth Kalichman, clinical psychologist and professor of psychology at the University of Connecticut, and one of the study's authors.
There are many reasons it might be harder for HIV positive transgender women to get treatment and stay on treatment, and chief among them is that the double-whammy of stigma around an HIV diagnosis and stigma around being trans, Kalichman says.
"Stigma gets internalized," he adds, manifesting as depression and low self-worth, and "has an impact on their willingness to get tested, get engaged." Approximately 40 percent of transgender people have reported attempting suicide at some point in their lifetime, according to the 2015 survey. Kalichman's research points to the need to create "well tailored treatment and adherence strategies" designed specifically for transgender people.
"I think the academic and medical community as a whole should [realize] that learning to provide accurate medical care to people of trans and gender non-conforming experience has to start when people are in medical school," Lewis says. "They should be taught how to engage with people of transgender experience."
And although the CDC is taking steps to improve trans-appropriate care with a forthcoming "kit" of education materials designed for doctors and clinical staff, the Trump administration's promise to rollback the Affordable Care Act's protections of trans people in healthcare settings means that discrimination may get worse before it gets better. With protections, the HIV epidemic is likely to continue to disproportionately harm the transgender population.
"Whenever there's a step forward in social acceptance and the decency of human rights, we see things improve" in terms of the HIV epidemic, Kalichman says. "But when you see a step back, like all this focus on banning trans people from the military, the bathroom shenanigans, all of that draws attention to the stigma." He refers to President Trump's reversal of an Obama-era policy that allowed trans people to serve openly in the military, and to the so-called 'bathroom bills' that would make it illegal to use a bathroom that does not correspond with sex at birth.
"If things keep going like they are right now, things are likely to get worse, Kalichman said. Transgender people will be even less likely to come forward and seek HIV care, and "you'll see more infections."
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