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Transgender Women and the HIV Care Cascade

, by Liz Highleyman

PuzzleLinksHIV-positive transgender women in San Francisco appear to be getting lost in the “cascade of care” and not getting the maximum benefits from HIV treatment, but a multi-pronged approach could help turn the tide, according to a study at the recent IDWeek conference and in the August 2013 American Journal of Public Health.

Due to a power outage at Moscone Center, the session at which these findings (abstract 1243) were to be presented was cancelled, but scheduled presenter Milo Santos from the San Francisco Department of Public Health (SFDPH) spoke with BETA and shared his slides.

The cascade of care is a way of looking at how many people with HIV receive various levels of care. As described in the December 2, 2011, Morbidity and Mortality Weekly Report, CDC researchers estimated that out of the estimated 1.2 million people living with HIV in the U.S., about 80% know their status and about three-quarters of these were linked to care. Although 77% of people who took antiretroviral therapy (ART) achieved viral suppression, this worked out to only 28% of the total HIV-positive population after losing people at every step along the way.

Santos, Jenna Rapues, and their team assessed the cascade of care among transgender women in the San Francisco, which has among the best networks of HIV/AIDS services.

Looking at the city as a whole, SFDPH’s 2011 HIV/AIDS Epidemiology Annual Report found that a total of 862 people were newly diagnosed with HIV during 2009–2010. Of these, 87% were linked to care within six months, 50% were retained in care for six to 12 months, and 50% achieved viral suppression within one year after diagnosis. By population subgroup, the report estimated that while 83%–89% of people living with HIV overall were receiving ART at the end of 2011, this proportion fell to 79%–83% for all women and to 77%–82% for transgender women. Transwomen also had the lowest five-year survival probability, at 75%, compared with 76% for all women and 85% for men.

Santos’ team employed respondent-driven sampling (RDS) of participants in the Transfemales Empowered to Advance Community Health (TEACH) study.

The sample included 314 transwomen contacted between August and December 2010. The RDS analysis statistically adjusted for probability of being recruited into the study, acknowledging that individuals in a group tend to recruit others like themselves. Participants received HIV tests and were asked about access to care, their most recent CD4 count and viral load, and use of ART.

According to the adjusted estimates, 38% of the transgender women were Latina, 22% were black, 18% were white, 5% were Asian, and 18% were “other.” The researchers acknowledged that the low representation of Asian transwomen limits their ability to draw conclusions about this group.

A majority of participants were in older age groups, with 22% being age 50 or older, about 33% in their forties, about 25% in their thirties, 17% in their twenties, and only 2% age 18–20 years.

Almost all lived full-time as women and 93% had taken female hormones, but only about 20% had undergone gender surgery. Nearly two-thirds were high school graduates and 7% had at least some college. Almost 90% were low-income, but 85% had health insurance. About two-thirds reported ever injecting substances not prescribed by a medical professional, but only 12% had injected in the past 12 months. Asked about number of sex partners during the past six months, 22% reported no partners, 24% reported one partner, and 24% reported five or more; 11% said they did commercial sex work.

The RDS-weighted estimate of HIV prevalence was 40%—similar to a previous SFDPH consensus estimate of 36%. But rates varied substantially by race/ethnicity: 46% among black transwomen, 32% among Latinas, and 5% among both Asian and white participants.

Among participants who tested HIV positive in the study, 95% were already aware they were infected. About three-quarters (77%) were linked to care within three months and 87% accessed care within six months. Although 65% were currently on ART, only 44% said they had undetectable viral load.

Factors associated with HIV infection included being a transwoman of color, injection drug use, and low education level. In addition, participants who identified as transgender women were at significantly higher risk than those who identified simply as women or female.

Having a higher number of sex partners was not associated with HIV infection, and in fact transwomen who reported the most partners had a significantly lower risk. The study authors speculated that participants reporting few partners may be exposed to HIV in stable relationships, and not having a “main partner” might be protective.

This analysis found that transgender women in San Francisco are “disproportionately affected by HIV compared with all other groups except men who have sex with men who also inject drugs,” the researchers concluded. Even in the setting of universal treatment, “less than half of transwomen [were] getting the maximum benefits of care and treatment.”

“It’s really important to highlight how transgender women are disproportionately affected by HIV,” Santos told BETA. “We need to collect better data and aggregate the data we have so we know the treatment cascade indicators for transgender women, because they are an under-researched and underserved population.”

Santos said that current initiatives to provide additional support are “really encouraging,” including a demonstration project trying to increase linkage, retention, and engagement in care for transwomen of color, run jointly by SFDPH, the Tom Waddell Health Center, and the Asian and Pacific Islander Wellness Center.

Liz Highleyman is a freelance medical writer and editor-in-chief of HIVandHepatitis.com.

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