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Meet Tori Cooper, the 1st Black trans woman on the presidential HIV council

Cooper said one of her priorities as a member of the Presidential Advisory Council on HIV/AIDS is “to be a voice for trans people.”
Tori Cooper
Tori Cooper.NBC News; Paul Morigi / Getty Images

Tori Cooper said the first time she used her voice as an advocate was about 20 years ago, when she worked on a Centers for Disease Control and Prevention program called Sister to Sister. She and another transgender advocate adapted the HIV risk-reduction program meet the unique needs of trans women.

“That was the beginning of it, and it’s just been going ever since, full speed ahead,” she said. 

Cooper, now the director of community engagement for the Human Rights Campaign’s Transgender Justice Initiative, was recently appointed to the Presidential Advisory Council on HIV/AIDS, which was created in 1995 to provide the federal government with advice and policy recommendations regarding the prevention, treatment and cure of HIV and AIDS. 

She brings her 30 years of experience in the field to the position, but she also brings her voice as a Black transgender woman — the first out Black trans woman to be appointed to PACHA.

She said she’s “absolutely elated” and humbled by the appointment and noted that one of her key priorities is to represent her community.

“One of many priorities I have is certainly to be a voice for trans people, gender-nonbinary people and gender-expansive people, making sure that our voices are heard,” she said. “And simply making sure that all policies that we’re looking at are inclusive of folks and that the HIV movement takes a much more inclusive and diverse trajectory moving forward.”

A 2016 report from the Joint United Nations Programme on HIV/AIDS found that transgender people are 49 times more likely to be living with HIV.

In the U.S. specifically, the CDC found that there are racial disparities among trans women who live with HIV. One CDC study of HIV prevalence among trans women in seven U.S. cities from 2019 to 2020 found that 62 percent of Black trans women were living with HIV, while 25 percent of Hispanic/Latina trans women and 17 percent of white transgender women had HIV.

Cooper said there are “too many” policy gaps that contribute to those disparities to name in just one conversation, but some of the most significant are stigma, health care access and a lack of trans-competent health care providers. She said there are a number of federal policy changes that PACHA should prioritize that would help address those issues — but they are policies “people wouldn’t necessarily think of as part of health care.”

‘Our people, our problem, our solution’

For Black people, including Black trans people, racism is among the most significant barriers to HIV care, according to the Rev. Rob Newells-Newton, director of national programs at the Black AIDS Institute, a national advocacy group dedicated to ending the HIV/AIDS epidemic in the Black community. 

The institute's We the People campaign, a Black strategy to end HIV, found that addressing HIV disparities means addressing “those structural determinants of health that we’ve seen throughout the Covid epidemic, how Black and brown folks are disproportionately affected, and the same thing exists with HIV.” 

Solving those problems requires “investing in communities to be the change for themselves,” Newells-Newton said. 

“One of our mottos at the Black AIDS Institute is ‘Our people, our problem, our solution,’” he said. For example, he said funds from the Minority AIDS Initiative, a federal grant program that supports community health centers that deliver care to minority communities, should go to organizations led by people of color “to solve the problems in our communities.”

For the same reason, he said it’s important that PACHA includes diverse voices such as Cooper's and Black AIDS Institute CEO Raniyah Copeland, who has also been appointed to the presidential council. 

“We need to make sure that the new national HIV/AIDS strategy really addresses the structural determinants of health, so it can’t just be biomedical HIV prevention, but I need all the PACHA members to bring in all the intersectional issues around housing and health care and employment and education,” he said. “All of that stuff feeds into the epidemic.” 

‘Trans folks have the same needs’

A number of federal policy proposals — which is what PACHA focuses on — could help decrease HIV disparities among Black trans women, Cooper said. 

Newells-Newton suggested Medicaid expansion in some states that haven’t expanded or universal, no-cost health care “so folks can get the care that they need.”

Cooper said low-barrier access to gender-marker changes on IDs is also important. 

“As a Black trans woman who has an 'F' on her ID, what it does is it makes it easier for my provider to write prescriptions for gender affirming health care,” she said. She added that she’s 51, so she also needs mammograms, and having an accurate gender marker leads to less pushback from insurance companies who often won’t cover mammograms for trans people whose ID still lists their birth gender. 

Whether trans people can access routine health care affects whether they can, or will, access HIV prevention and care, she said. 

Though most physicians report being willing to serve trans people, some might not have the skills to provide trans-competent care: One small survey published in the Annals of Family Medicine in 2018 found that 86 percent of clinicians were willing to provide routine care to transgender patients, but only about 69 percent of them reported feeling capable of doing so.

“We have to make sure that providers understand that as trans folks we have the same needs as every other community but also very unique needs as well,” she said. “Cisgender women don’t need prostate exams; trans women do. Cisgender men don’t need gynecological care; trans men do. And so, true HIV health care — through comprehensive and inclusive health care — includes all of those, and there are a number of different ways to get to that.”

Cooper said she looks forward to these issues being solved in the future — because they can be, as more people are given a seat at the table.

"I'm looking forward to being unemployed and having to go and sell shoes for a living," she said. "Because some of these very, very simple problems with navigating health care systems and navigating policy … so many of these systems will be broken down and be much more inclusive, and the folks who create the laws and enforce the laws will be much more diverse."

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