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Putting the ‘T’ back in HIV care

As trans women of color suffer disproportionately from infection, activists are pushing for greater inclusion in the prevention and treatment

Tori Cooper, image courtesy of Them.Us.

By Camellia Burris

On the morning of August 4, 2021, Tori Cooper sat in her home in Atlanta as she was sworn in, via Zoom, as the first Black transgender woman to serve on the Presidential Advisory Council on HIV/AIDS. Appropriately enough, the highest ranking openly transgender government official — Dr. Rachel Levine, assistant secretary in the federal Department of Health and Human Services – officiated for the induction. Cooper and her fellow new members held up their right hands as they solemnly swore to faithfully discharge the duties of the office in which they were entering. Dr. Levine then thanked them for their service as the members erupted into applause. 

Cooper’s historic appointment represents a breakthrough for the transgender community, all the more so because she is a woman of color. Membership on this advisory board affords Cooper a national platform to advocate for the needs of other marginalized people – an opportunity she does not take lightly. “I am very honored to be the first out Black trans woman,” she said in a recent interview. “I don’t represent only myself. I also represent a whole bunch of different people and other communities as well who will never have the opportunity to sit in this very esteemed seat.”

Yet her appointment, however monumental, also illuminates the lack of HIV outreach focused specifically on the issues plaguing transgender women of color. While Cooper expressed her honor at joining the task force — which was established in 1995 to advise the federal government on policy recommendations to prevent, treat, and cure HIV/AIDS — she pointedly noted, “It is a sin and a shame that after 30 years we’re still having ‘firsts.’” She further explained that this lack of inclusion is a glaring problem spanning all sectors of society. “There are still positions and glass ceilings that trans people, and then again, more specifically trans women, have not broken through yet,” she said. Thus, her appointment, landmark though it may be, should be seen as a step in the unfinished agenda in bringing HIV outreach to transgender women of color, and not a culmination of those efforts. 

Cooper brings a wealth of advocacy experience, which includes her current position as the campaign director of community engagement for the Transgender Justice Initiative at the Human Rights Campaign (HRC) – the nation’s largest LGBTQ civil rights organization. 

“One of my goals is to make sure that in every single conversation, where appropriate,” she said. “Black and brown trans and nonbinary community members, but with special emphasis on Black and brown trans women, are included because we have so often been left out of conversations.”

Chief among her many initiatives is fostering more inclusive conversations surrounding the HIV epidemic, with a focus on transgender women of color –a group whose plight has rarely received the necessary attention despite alarmingly high transmission rates. Cooper’s decision to highlight the needs of Black and brown transgender women is supported by the Centers for Disease Control and Prevention (CDC), which has documented striking racial differences in the infection rates among transgender women. In a study conducted in seven major cities earlier this year, the CDC calculated that four in ten transgender women have HIV. However, Black transgender women have a 62% infection rate and Hispanic/Latina transgender women have a 35% infection rate in comparison to a 17% infection rate among their white counterparts.  

In addition to heightened health risks, noted T.S. Candii, a transgender activist and sex worker, transgender women of color also face the persistent threat of harassment and arrest at the hands of law-enforcement officers, who often disproportionately target Black and brown transgender women when cracking down on sex work. 

“The laws were set up for police to be able to stop and frisk Black and brown transgender women just by what they were wearing,” Candii said in a recent interview. She argued that laws regulating sex work afford police too much discretion when determining who is loitering for the purposes of prostitution. “Law enforcement identified transgender women by their Adam’s apple, by the size of their hands and feet,” Candii said. “We actually have officers that swore in the police report description that, ‘Oh, she was wearing sweat pants and a sweat shirt, so I got her for prostitution.’”

A collaborative report produced by the National LGBTQ Task Force and the Center for HIV Law and Policy supports Candii’s assertion. “The Intersection of Sex Work and HIV Criminalization” stated that LGBTQ people and people of color are more likely to be impacted by the criminalization of sex work as a consequence of law enforcement’s regular habit of profiling transgender women of color as being sex workers. As a result, police disproportionately target, harass, and arrest transgender women of color when enforcing laws regulating sex work. 

The Center for HIV Law and Policy also cited the Lancelot Medical Journal which released a series of articles focused on HIV and sex work. One 2014 study by the center – an organization that challenges barriers to the health and rights of people living with HIV through legal advocacy, policy initiatives, and cross-issue partnerships — demonstrated that decriminalization of sex work could reduce HIV infections by 33 to 46 percent over the next decade. 

However, Taina Bien-Aimé, the executive director of the Coalition Against Trafficking in Women, challenged the study’s theory that the decriminalization of sex work will lead to increased condom use. She asserted that the study fails to acknowledge the power dynamics at play between the buyers and sellers of sex. “What they do not take into account is that condom negotiation is almost non-existent,” Bien-Aimé said. “You have one party that has the power and the control and the disposable income to purchase you.” Since patrons of sex work are seeking to exercise a sexual fantasy, condom use is typically the decision of the buyer rather than the seller, she explained. 

Over the past 40 years, HIV activists have led the charge among various Queer political movements, seeking legal protections for members of the LGBTQ community and working to block or repeal dangerous policies. 

LGTBQ and HIV advocacy communities face limited resources and competing interests, but Cooper and Candii insist that HIV activists must be more intentional about bringing the heightened burden of HIV on transgender women of color to the forefront as well as fighting against policies that disproportionately target them.

The advent of the AIDS crisis in the United States in the 1980s ignited the creation of countless AIDS advocacy groups. Perhaps the most notable was ACT UP — the AIDS Coalition to Unleash Power, an international, political group founded in 1987 with the goal of ending the AIDS epidemic. 

A side effect of the rise in AIDS activism included a reimagining of the Queer political movement. “The AIDS crisis mobilized LGBTQ people as nothing else had ever done before,” according to Sue Hyde, the former director of the National LGBTQ Task Force. 

The establishment of ACT UP was arguably one of the most pivotal moments in the Queer political movement since the Stonewall Uprising. Widely viewed as the catalyst for the gay rights movement in the United States and around the world, the Stonewall Uprising began in the early morning hours of June 28, 1969, when New York City police raided the Stonewall Inn, a gay club in Greenwich Village. Bar patrons and neighborhood residents protested when the police acted violently.

While Stonewall was undoubtedly one of the most pivotal moments in Queer political history, Candii notes that documentation of the uprising is a prime example of the trans erasure she sees today within both the HIV and LGBTQ movements. “We know that it was a Black transgender woman that threw the brick at the police which started the riots,” Candii said, “but when you look at the documentary of Stonewall, they don’t even have a Black trans woman in the documentary.” 

Candii’s concerns about trans erasure within Queer political movements were further evidenced in the legislation proposed – but never enacted –as the Employment Nondiscrimination Act (ENDA). First introduced in 1994, ENDA made it illegal to discriminate against employees in all aspects of employment based on a person’s actual or perceived sexual orientation. Both the House and the Senate versions of the bill died in committee that year and would continue to do so for several years. 

In 2007, lawmakers introduced a trans-inclusive version of ENDA in the House that prohibited employment discrimination based on gender identity in addition to actual or perceived sexual orientation. After the revised version failed in committee, openly gay Rep. Barney Frank removed provisions protecting transgender employees from discrimination and made a second attempt to push the bill through. The House passed ENDA by a vote of 234 to 184. However, the Senate refrained from referring the bill to a committee or bringing it to a floor for a vote. 

Just as Queer political movements have struggled with inclusion, HIV activists have often differed in determining the most effective methods of motivating political leaders and society at large to provide resources, time, and attention to the LGBTQ community.  

An illustration of such choices, according to Cooper, is the Ryan White Cares Act –the largest federal program designed specifically for people living with HIV who are uninsured or underserved. The legislation was enacted in 1990 with an initial appropriation of $220 million in federal funding. 

At a time when AIDS was still heavily associated with perceived immorality, such as homosexuality and drug use, the legislation was named for a white teenager from Indiana, who came from a respectable, supportive family, and was free form the stigma of AIDS that plagued others infected with the virus. Because White had become infected from a blood transfusion, Cooper noted, society would care more about White’s plight because “he hadn’t done anything wrong.” And his perceived innocence led to him becoming the face of the AIDS epidemic.

Making a young, straight white boy from the Midwest “the face” of the AIDS movement was part of a strategic plan by AIDS activists to “de-gay AIDS,” according to activist Urvashi Vaid. In her 1995 book, “Virtual Equality: The Mainstreaming of Gay and Lesbian Liberation,” Vaid stated that de-gaying AIDS, or removing the stigma of homosexuality from AIDS, seemed the most feasible way of obtaining financial and medical help from a conservative Republican administration. She further noted that the activists decided to focus on AIDS instead of racism or homophobia, which were often the causes of governmental inaction and societal indifference. 

However, Cooper understands the reasoning behind those decisions, noting, “Early on, folks had to leverage the bit of privilege they had in society.”

The absence of privilege, Cooper contended, contributes to the lack of attention geared towards the plight of transgender women of color within the HIV epidemic. “I feel quite often that trans women and more specifically Black and brown trans women have so little privilege in society that there are folks who deem us unworthy,” she said. The intersectionality embedded in her identity as a Black transgender woman, Cooper explained, further removes her from society’s idea of perfection or worthiness.

Cooper’s plan to shift more attention to the needs of transgender women of color includes equipping advocates at the local level with the tools needed to create change in their communities. One of the most needed tools, Cooper said succinctly, is money. For example, the Human Rights Campaign’s Transgender Justice Initiative (TJI) has a small grants program that, to date, has provided 30 $1,000 grants to projects and programs that advance transgender justice issues. Cooper further noted that TJI also offers leadership and development trainings, and, since 2019, has graduated almost 50 Black and brown trans and non-binary advocates. 

In addition to the discrimination aimed at the transgender community from mainstream society, Cooper also spoke of the tension created by the allocation of limited resources within the LGBTQ community. “There’s some pockets of MSM communities who feel that they have to fight against trans people for funding, for resources, so that creates one additional barrier,” she said. MSM refers to gay, bisexual, and other men who have sex with men. 

Cooper further explained that the exclusion of the transgender community goes beyond fighting for resources and attention, but rather extends to the fight to be included in the marketing and research for HIV-prevention and treatment drugs. As an example, Cooper noted that manufacturers of PrEP (pre-exposure prophylaxis), a medicine for the prevention of HIV, previously excluded the trans community from testing trials and their initial rollouts. 

Fortunately, Cooper is now in a position to push for changes in trans inclusion in marketing and trials. The Transgender Justice Initiative, for example, is funded by the biopharmaceutical company Gilead Sciences through 2022, Cooper said. 

Cooper’s concern about PrEP’s previous exclusion of trans people is especially noteworthy in light of the 2020 CDC “HIV Surveillance Special Report: HIV Infection, Risk, Prevention, and Testing Behaviors Among Transgender Women.” The report stated that using PrEP tailored to at-risk populations is a major key to HIV prevention among transgender women. Its study, which was conducted across seven U.S. cities, found that PrEP awareness among HIV-negative transgender women was 92%, but actual uptake only reached 32%. To account for the discrepancy between knowledge of the drug and its actual use, CDC listed lack of trans-inclusive PrEP marketing as a major barrier. 

Cooper does, however, concede that recent marketing campaigns have been more inclusive of trans feminine people.

Inclusion is key, Cooper insists. Equally as necessary is an understanding of how discrimination in education, housing, and healthcare constitute key factors driving the staggeringly high transmission rates among transgender women. “When we talk about housing and education, in public health, we refer to them as the social determinants of health,” she said. “When we look at the social determinants of health and we look at transgender people as a whole, we look at the lives of transgender people, we know that trans, non-binary, and other LGBTQ+ folks are bullied at a higher rate than their heterosexual cis counterparts starting in school.” 

This bullying, coupled with discriminatory and archaic policies enacted in many schools, Cooper noted, leads to fewer Queer people graduating from high school, and even less graduating in the top portion of their class, a key element of admission to selective colleges. Those who do manage to graduate have trouble obtaining gainful employment as an openly trans or nonbinary person. 

“If you don’t have gainful employment, then it makes it much more difficult for you to have stable and secure housing and it makes it more difficult to get further in your education which makes it more difficult to get private healthcare insurance,” Cooper said. “So, all of these things snowball together.”

When addressing these issues, Cooper noted that the HRC is not a direct service organization, explaining, “Much of our work is focused on changing hearts and minds of both lawmakers and the general public so that the social determinants of health are addressed.” As an example, Cooper noted that both the HRC and the TJI are pushing for the Equality Act to be signed into law because it will provide protections based on gender and gender identity in public accommodations. “If trans people can no longer lose our jobs because of anti-trans discrimination, then that helps fight poverty,” Cooper explained. “When trans people are gainfully employed, that helps eradicate homelessness. When there are legal protections against bullying in schools, trans and non-binary kids have a better chance of getting through school and furthering their education.” 

These same instances of discrimination push many transgender women to sex work according to “The Intersection of Sex Work and HIV Criminalization” report, which analyzed the convergence of the legal and health risks plaguing sex workers. The 2015 U.S. Transgender Survey found that among the transgender respondents who had experienced severe discrimination, 12% had engaged in sex work. 

Understanding these issues through first-hand experience, Candii is the executive director and founder of Black Trans Nation, a non-profit organization that provides financial assistance, as well as short-term and long-term housing to Black transgender sex workers in need. 

While her life’s work is dedicated to advocating on behalf of fellow Black transgender sex workers, Candii herself worries that the current laws regulating sex work leave her vulnerable to imprisonment. “Legally, I can go to jail any day,” she said. “They can pull up at my house right now while I’m on the phone with you and can lock me up for promoting because my organization gives prevention funds to sex workers.” The prevention funds cover housing, transportation, and childcare fees. 

According to prominent LGBTQ activists, HIV activists must focus on providing transgender women inclusion, resources, and funding. In addition, transgender sex workers need some relief from their social, economic, and legal burdens.  

Cooper specifically encourages more well-known HIV advocacy organizations to leverage the privilege and power that they have in society to create a more equitable distribution of resources and access –creating long-term opportunities that are much more inclusive of transgender people.  “As we get more Black and brown trans folk and trans folk from across the board involved in every single aspect of HIV and the distribution of wealth and resources,” she said, “then what we’ll see is not a trickle down, but really a running down –an overflowing of resources that are going to be much more impactful in Black and brown communities.” 

Cooper’s proposed use of these funds include investing in subject matter experts in Black trans lives and directing funds towards HIV-prevention programs so that marginalized people can obtain PrEP for free. Candii echoed Cooper’s sentiments and suggested a collaborative effort among advocacy groups with different agendas. “Organizations focused on the decriminalization of HIV should connect with the Black trans led organizations that are working to decriminalize sex work,” she explained. Hyde also stressed the importance in diversity in leadership positions of HIV advocacy groups. “What must happen: we need those people in leadership positions –not just in organizations that are specific to themselves but also in organizations that are doing Queer work, AIDS work, and sex work advocacy,” she said. “The value of leadership from a specific community and specific space cannot be overestimated.”

Still, as more attention shifts towards the issues plaguing transgender women of color, Candii worries about exploitation and tokenism. “Being a Black transgender woman, I have to make sure that I’m not being used as a token or being exploited,” Candii said.  

There have been recent signs of progress pertaining to sex work policies that disproportionately target transgender women of color. On February 2, 2021, then-New York Gov. Andrew Cuomo signed a bill repealing the anti-loitering for the purposes of prostitution statute, commonly referred to as the “Walking While Trans” ban. He subsequently released the following statement, “Repealing the archaic ‘walking while trans’ ban is a critical step toward reforming our policing system and reducing the harassment and criminalization transgender people face simply for being themselves.”

However, Candii expressed dismay that despite her advocacy work playing a major role in repealing this statute, her organization has received no funding from the city or state. Had her organization been led by a white activist, Candii believes that there would be more financial support. 

The criminal justice system’s approach to sex work showed further signs of evolution when, in April 2021, Manhattan District Attorney Cyrus R. Vance partially decriminalized sex work –now only prosecuting the patrons and promoters of the trade.

While challenges to discriminatorily applied policies combined with more inclusion in HIV-advocacy groups and HIV-prevention marketing campaigns are an excellent start, in Cooper’s view, alleviating the high burden of HIV on transgender women of color requires a sustained and consistent commitment. 

“I don’t want this be a one-time deal, I don’t want this to be a three-year, during the course of the Biden administration,” she said. “There needs to be much more access. There needs to be far more opportunities for advancement.”

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Author: Camellia Burris

I am an attorney and journalist based in New York City. I am currently pursuing a graduate degree at Columbia Journalism School with a focus on investigative journalism. As a graduate of an historically Black women’s college, I am especially passionate about telling the stories of marginalized women and girls.