Sept. 16, 2021 -- In August, when Assistant Secretary for Health Rachel Levine swore in eight new members to the President’s Advisory Council on HIV/AIDS (PACHA), the U.S.’s most influential policy sounding board of people living with HIV, their clinicians, drug makers, and public health leaders, she was presiding over the largest group of HIV advisers since former President Donald Trump fired the entire membership in June 2017.
It was notable for other reasons, too. Not only is Levine the first transgender woman to hold her role, but the current White House director of national AIDS policy, known as the AIDS “czar,” is Harold Phillips, a gay Black man who has been living with HIV for 16 years and has been working in HIV policy for more than 2 decades.
Of PACHA’s 20 members, 10 are Black Americans, reflecting the disproportionate impact HIV has had on Black communities. And six of those are Black women, including the first Black woman of transgender experience on the council, Tori Cooper, who leads community engagement for the Human Rights Campaign’s Transgender Justice initiative, as well as new PACHA co-chair Marlene McNeese, assistant director of the Houston Health Department, Kayla Quimbley, an HIV youth advocate, and Raniyah Copeland, the former chief executive officer of the Black AIDS Institute. They join Alicia Diggs, PhD, of the University of North Carolina, Chapel Hill, and American Academy of Family Physicians board member Ada Stewart, MD.
The presence of all these Black women was purposeful, Phillips tells WebMD. The Office National AIDS Policy selected these women both for their expertise and because Black trans and non-trans women are often an under-recognized group impacted by HIV.
“Black women are a priority population,” Phillips says. “Being able to reach, communicate, increase awareness” of HIV’s impact on Black women will be key to ending the HIV epidemic. But Black women are something else besides a priority population.
The record number of Black women and the abundance of Black leaders on the advisory council reflects the long legacy of Black experts’ and advocates’ work in the HIV movement -- one that’s often been overlooked, says Daniel Royles, PhD, an assistant professor of history at Florida International University.
“The received wisdom is that [Black activism] in HIV came later than activism of white gay men,” says Royles, author of To Make the Wounded Whole: The African American Struggle Against HIV/AIDS. “Black women HIV leaders have been pretty undocumented and under-recognized.”
A PACHA-less Plan to End HIV
In 1988, HIV incidence among Black Americans surpassed that of white Americans, according to the CDC.
In 2019, 36,801 Americans received an HIV diagnosis, despite effective treatment and prevention options. In 2019, despite accounting for only 13% of the U.S. population, Black Americans made up 43% of new HIV diagnoses. Similarly, in 2018, a full 67% of HIV diagnoses among gay and bisexual men in the U.S. were among Black or Latinx men. And while transgender people made up just 2% of new HIV diagnoses, 49% of those were in Black people. And for cisgender women (women assigned female at birth), Black women account for 57% of new diagnoses. Rates are especially high for young people and people living in the South.
By the end of 2020, 8.4% of the nearlyhalf a million Black Americans who could benefit from the HIV prevention pill, known as pre-exposure prophylaxis (PrEP), were taking it, according to preliminary data released by the CDC Meanwhile, seven times as many white Americans were taking PrEP despite accounting for a lower proportion of those at highest risk.
At the beginning of the Trump era, six of PACHA’s 16 members quit the board in protest over Trump administration policies that would make it harder for people with pre-existing conditions, including HIV, to get health insurance, according to news reports. By the end of 2017, Trump had fired the remaining members. His administration never appointed a director of the Office of National AIDS Policy and reconstituted an abbreviated PACHA with nine members in March 2019. The council can include as many as 25 members.
In between the firing and the reformation of PACHA, Trump launched Ending the HIV Epidemic in the U.S., with the ambitious goal of cutting new HIV diagnoses by 75% by 2025 and 90% by 2030. The initiative planned to do this by drastically expanding access to PrEP to people not living with HIV but who have a high risk of acquiring HIV, and by getting effective HIV treatment, which can eliminate sexual transmission of the virus, to people already living with it. It also aims to shift resources to areas with outbreaks, and to expand HIV testing.
But the plan launched without benefit of an advisory board made up of members who could sell it in their communities or inform the approaches. Perhaps as a result, former CDC Director Robert Redfield, MD, one of the architects of the plan, was prevented from speaking in 2019 at the United States Conference on AIDS 2019 by more than 50 protesters living with HIV who chanted, “You can’t end this without us.”
The Trump administration “really didn’t show a willingness to engage with the community,” says Jeffrey Crowley, program director for Infectious Disease Initiatives at Georgetown University’s O’Neill Institute for National and Global Health Law, and AIDS czar from 2009 to 2011. “So, what’s new about this PACHA is [the administration] is trying to say, ‘No no, we’re listening again. Our door is open, and we really want to have a dialogue with you now.’”
Recognizing Black Leadership
Crowley praised the appointment of McNeese as PACHA co-chair, calling her a collaborative leader who “is known for being inclusive.” He also says he’s “a big fan” of Leo Moore, MD, medical director of clinic services for the Los Angeles Department of Public Health, who created programs to roll PrEP out to communities most impacted by HIV, as well as expanded mental health programs. . He used the template he created to expand PrEP access to get vaccines out into communities most heavily impacted by COVID-19.
To get PrEP to communities that could most benefit from it, Moore says he started withcommunity listening sessions. Then his team created centers that included services provided by community groups that were not necessarily HIV groups, as well as financial navigation services, to ensure that everyone who could benefit from PrEP could get it, regardless of income or insurance status.
“It starts with the importance of listening to community,” he says. And as a same-gender-loving Black man whose best friend was diagnosed with HIV while the pair were in college, the need for community involvement isn’t a luxury, it’s critical to the success of any treatment or prevention program.
New PACHA member Copeland agrees. d. In the first 90 days of her tenure at the Black AIDS Institute (BAI), Trump introduced the Ending the HIV Epidemic plan, without much mention of community and with no plans to address racial justice issues like housing, mortgage, and employment discrimination that research shows make Black people more vulnerable to acquiring HIV in the first place, as well as more vulnerable to poor HIV outcomes once they have the disease. So, under Copeland’s leadership, BAI launched We the People, billed as “a Black strategy to end HIV.”
But she didn’t come up with the recommendations in the plan, which include funding the fight against HIV in Black communities the way the government has traditionally funded HIV programs and services in white gay communities: by funding groups that already work in the community to deliver health care and services. Right now, the Ending the Epidemic plan calls for rolling out PrEP and care through public health departments, which often fail to bring HIV prevention to the Black gay and bisexual and transgender adults who need it most.
What she did was create a framework to interview, hold town hall meetings and community forums, and build advisory boards and events where members of Black communities could spell out what needed to happen in their communities. Her goal on PACHA, she says, is not just to continue to talk about HIV as a racial justice issue, but also to put that fact into action. And she doesn’t pull any punches.
“This is something you’ll hear from me over and over again until we start seeing concrete changes in how we resource communities that are most impacted by HIV,” she tells WebMD. “Black-led agencies, trans-led agencies, agencies by people living in the South. There are so many resources that are invested in HIV, and not nearly enough resources are going to community-led initiatives to respond to HIV.”
For her part, Copeland is aware she serves on PACHA on the shoulders of Black women -- people from Black communities. And she does so with love.
“People who are impacted by HIV -- Black people -- they are family: They are our sons, they’re our children. They’re our uncles. And I think that for Black women, in the way that patriarchy has set it up, we are very clear that when there’s a threat to [Black] people, that means there’s a threat to Black women. It’s our own survival and it’s our community’s survival.”