New York City is the first city in the United States to meet a key international target aimed at ending the HIV/AIDS epidemic, doing so two years ahead of schedule. On December 2, the day after World AIDS Day, the city announced that a historic number of New Yorkers are aware of their HIV status, are accessing treatment if positive, and are virally suppressed.
But as Mayor Bill de Blasio and other officials heralded their success, new city health department data on transgender New Yorkers living with HIV was quietly published that same day. The numbers from that report reveal that transgender women of color—who live at the intersection of racism, misogyny, transphobia and often poverty—have yet to enjoy the same leap forward in access to care and wellness as the rest of the city’s residents.
The Mayor’s Office made no mention of this second report in its press release, and did not respond to Filter‘s request for comment by publication time.
Politicians’ erasure of the conditions facing trans women of color is nothing new for Mariah Lopez, the executive director of the trans rights organization STARR and consultant for the state-run AIDS Institute.
She told Filter that the tendency of the white cisgender—and often gay or lesbian—establishment “claiming that their wins are our wins” goes all the way back to the experiences of her trans ancestors. Lopez’s mother, Sylvia Rivera, is credited alongside Marsha P. Johnson for launching the contemporary trans rights movement in the late 1960s. Rivera iconically amplified the issues facing her generation, and their dismissal, in a speech (below) at 1973 Gay Pride Rally.
“When have policies and laws designed mainly by cis white folk ever had a long-term positive impact on the lives of those like myself, Sylvia and Marsha?” Lopez asked.
The report being heralded by New York City this week is related to the UNAIDS so-called 90-90-90 targets. New York and other cities around the world have committed to ensuring that, by 2020, 90 percent of people living with HIV will know their status, 90 percent of people diagnosed as positive will access antiretroviral therapies, and 90 percent of people on treatments called antiretroviral therapies (ART).
According to the 2018 HIV surveillance report, the city hit the target for treatment for HIV-positive people in general. It even surpassed the other two goals: 93 percent of people living with HIV have been diagnosed and 92 percent are virally suppressed.
“With more New Yorkers receiving treatment than ever, the day of zero diagnoses is closer than ever—something many believed unthinkable not so long ago,” said Mayor Bill de Blasio, who has signed onto the Paris Declaration, a commitment between more than 300 cities and municipalities around the world to “fast-track” their AIDS responses by 2020. “We will not rest until we end the epidemic once and for all.”
But de Blasio will have to address the disparate outcomes for trans women if he wants to make good on his commitment. Trans women—the vast majority women of color—comprise 3 percent of people newly testing positive in New York City. Falling well below two of the 90-90-90 goals, 84 percent of HIV-positive trans women had been prescribed ART and only 70 percent had been virally suppressed. They knew their status at the same proportion as HIV-positive New Yorkers generally.
“We’re really excited about the 90-90-90 goals, but in no way are we swayed that we are at the end of anything,” Dr. Demetre Daskalakis, the deputy commissioner for the Health Department’s Division of Disease Control, told Filter. “It’s time to call us out on areas that we need to pay attention to.”
For Lopez it’s clear that the underlying social issues facing both HIV-positive and HIV-negative trans women have been ignored. These include “homelessness, untreated mental illness (including increased substance abuse), and the criminalization of consensual safe sex work.”
In New York City in 2018, around a quarter of transgender women newly diagnosed with HIV had both a history of substance use and incarceration, and 7 percent had experienced homelessness. Across the state, over a quarter of surveyed trans women, regardless of HIV status, had experienced homeless at some point in their lives, reported the US Transgender Survey in 2015.
By addressing social determinants of health, Lopez believes “filling gaps in other City-run and -funded services for trans women”—which she says could be done by “improving the shelter system for trans folk, and funding more trans-led medical services models and nonprofits in NYC”—”would go a long way.”
As one of the leaders of the city government’s HIV response, Daskalakis agrees with what Lopez is saying. “We need to realize that people’s lives aren’t in a vacuum.” But he also thinks that adjustments to the existing HIV care and services are in order.
The city health department launched an HIV testing initiative, “New York Knows,” on World AIDS Day 2014, and it has grown into the largest program of its kind in the nation. Additionally, public and private providers formed the PlaySure Network in 2016 to boost accessibility of pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), which could be described, crudely, as the “birth control” and “Plan B” of HIV, respectively. The former is a once-a-day medication that reduces the risk of becoming HIV-infected through sex by 99 percent, while, the latter is taken within 72 hours of exposure and is “effective, but not 100 percent,” according to the CDC.
In 2017, getting nine out of 10 people living with HIV onto antiretroviral therapy was the final front in order to bring the city in line with the 90-90-90 goals. The most common barriers to ART adherence were an income below the federal poverty line, food insufficiency, unstable housing, and mental health issues, according to data from “The Undetectables,” an HIV treatment program first developed by service provider Housing Works in 2014 and later replicated across the city in 2016.
By integrating primary care, case management, and other services like support groups and resources like financial incentives, the city-wide program had enrolled over 1,870 people by the end of June 2018.
Increasing provider competency in the needs and culture of trans and gender non-conforming (GNC) folks is an important area of growth for the city’s HIV response, said Dskalakis. “People are worried about discrimination of going into a clinic. Are they going to get my name wrong? Are they going to misgender me? That creates a dynamic that makes it hard to get care.”
“At the end of the day, my experience is that when people feel like their care environment is better, they connect better [with services],” he said. The city’s information phone line is already prepared to direct trans and GNC New Yorkers towards pre-screen transgender-affirming care providers, and the city has trained clinic staff in “being more responsive to the trans community,” said Daskalakis.
Simply changing the minds and attitudes of cisgender care providers isn’t enough, said Lopez. “The mayor and those he has appointed have repeated the failings of previous administrations and generations: believing that the Gays and Lesbians, that those in white coats and who speak ‘proper’ English, speak for us, understand us.”
“We do not need to be told what we need! We need policy makers and the government to listen [to us].”