“Trust Black Women” Is More Than a Concept: It’s the Future of Our HIV Response

There’s a new glimmer of change in our HIV response, and it’s reinvigorating some of the communities most impacted by the virus in the United States.

In the past few months, two amazingly innovative, dedicated, and talented Black women have actualized the #TrustBlackWomen campaign by showcasing it in their new leadership of transformative HIV-focused institutions: Danielle Houston, M.S.P.H. (she/her), the executive director of the Southern AIDS Coalition, and Monique Carry, Ph.D. (she/her), the executive director of the Prevention Access Campaign.

Let’s be crystal clear: Over 45 years into our awareness of the HIV epidemic, we still see a focus on the communities that were originally centered in the initial response, especially white gay men. Today, I see many conversations within these groups centering on healthy aging with HIV, and measurements of quality of life and health outcomes are in line with their peers not living with HIV. In other communities, the realities of life with HIV are often a lot harder.

The original MMWR reports on HIV centered white gay men in New York City and Los Angeles. Yet as Michael Gottlieb, M.D., the L.A. clinician who authored one of those reports, once told me: “If I had known the societal impact of not including my Black patients and my female patients that I suspected had AIDS in my initial report, I would have waited till I was sure and added them.” The false narrative that HIV was (and still is) a white gay disease has fueled massive disparities in investments and tools to support the most impacted populations.

What is true today is that Black people, particularly Black women, bear the brunt of the epidemic around the world. According to the Centers for Disease Control and Prevention (CDC), Black people in the United States are more than six times as likely to die of HIV-related causes than their white peers and three times more likely than Hispanic/Latinx(e) people. And women and girls account for the majority of people with HIV globally, with transgender women being especially impacted.

Both Houston and Carry fully understand the ties between the global HIV epidemic and our domestic one. Houston’s family came to the USA from St. Croix, in the Virgin Islands. Carry was born and raised in our nation’s capital, Chocolate City—aka Washington, D.C., where the HIV epidemic in the late 1990s was as bad as just about anywhere in the world (at over 3% seroprevalence).

How Their Roots Shaped Them

Both leaders’ parental figures were major influences in their personal and professional journeys. “Both of my parents are artists. And I was a very studious and nerdy child,” Houston—whose surname matches the Texas city she was born in—told me. “My parents didn’t know what to do with me. But I had very few no’s. They felt like their job was to keep me grounded and help me do ‘that thing.’ When I graduated [from college], I told them: ‘Thank you for having the strength to give me roots and the courage to give me wings.’”

Carry grew up in the Washington, D.C. metro area. “My grandmother was incredibly strong, even when life was hard for her; she showed me what resilience means,” she recalled. “And my mother has always shown strength, grace, and steady support throughout my life. To this day, my mother is out there living her life to the fullest.”

Each of them took their foundations and navigated some of the challenges that the world often gives Black women on their way to reaching their current high roles in the HIV movement. Houston remembered: “While in college, I worked as a Black domestic just so that I could stay [due to reduced financial aid from her college], ’cause dropping out wasn’t an option.” She repeated, “It just wasn’t an option. I became a nanny, a Black domestic, in college in order to stay and graduate. I also taught phonics and literacy for students at risk of being held back in the inner city of Boston, because I always viewed myself as a teacher.”

For Carry, her community and environment also shaped who she is today. “I am D.C. true and through,” she told me. “I went to Howard University, in the middle of the District,” an HBCU—aka historically Black college/university. Howard is often called “The Mecca” because of its global renown for shaping pioneering Black leaders, including Supreme Court Justice Thurgood Marshall and Vice President Kamala Harris. Carry went on to say, “My time at The Mecca shaped every part of who I am today, and I rep my alma mater like crazy. H-U!!!”

These early experiences helped each of them develop the tools that they would use to become national leaders in the HIV movement today.

Realistic—and Determined—Leaders

Both Houston and Carry bring a fresh and sorely needed perspective to HIV work. I asked each of them whether we have the biomedical and social tools to realistically end the HIV epidemic. Houston responded: “Yes, we have the tools, but I don’t know if we know how to use those tools. Medicines don’t work in patients that don’t take them. We can’t squeeze any more resilience out of people. We have to change our systems. The impact of medicines is minimal for people who aren’t going to get it. People must be able to understand the benefits and not just the features of a medication.”

Carry concurred. “The science has given us an incredible foundation. We know these tools work. We know that people who reach and maintain an undetectable viral load cannot sexually transmit HIV, known as undetectable equals untransmittable (U=U). We have PrEP and more,” she said. “But the challenge is making sure everyone has the opportunity to benefit from them. Too many people still face barriers unrelated to medicine like racism, poverty, discrimination, and criminalization. Unequal access to health care shapes who benefits from scientific progress and who gets left behind.”

Their drive and lived experiences are enhanced by their professional and academic experience. After earning her public health degree, Houston served in nonprofit and pharmaceutical leadership, where she advocated for systems and holistic approaches to support the most impacted communities—with a focus on communicable diseases in a global setting. Carry, after earning her doctorate in philosophy, was an adjunct professor at Georgia State University before shifting her focus to join the CDC, where she worked her way up to a senior role in the CDC’s global HIV prevention division.

It is important to state that the places these women now hold in the history of the HIV response are not lost on either one. I know of only a handful of historically white HIV service organizations (i.e., those that are consistently well-funded), including global institutions, that have had two consecutive Black executive leaders. One of those is the Southern AIDS Coalition, which has now done so two times. This is an important shift toward what we have long called for: continuity within a community-centered response, especially for a geographic population with HIV that is majority Black.

I asked Houston and Carry if the HIV response is ready for leadership that more accurately reflects the global epidemic. Houston was both humble and resolute: “The achievements of Black women are not at the expense of anyone else,” she said. “I challenge the analogy of ‘crabs in a barrel.’ The real question is: Why are crabs in the barrel when that’s not their natural habitat? The barrel is fake. We have to realize that we exist in the ocean. People want our labor without our leadership.”

Carry told me: “Black women have always been at the center of strengthening communities and moving the HIV response forward, even when our contributions have not always been recognized. For me, this is about more than representation. It is about improving outcomes. Our voices are essential to creating a response that is equitable, effective, and capable of ending the HIV epidemic.

“When Black women are in leadership and decision-making roles, the conversation changes,” Carry continued. “We are more likely to recognize barriers that others may overlook, whether that is stigma, racism, poverty, gender inequality, or the daily realities of navigating health care systems.”

Transforming Our HIV Response, Together

Both women speak directly to the whole-system changes and the holistic changes that are necessary to bring the HIV epidemic to a close. They are working daily to close the systemic gaps that are centered on discrimination and station of birth. This will take serious work, strategic partnerships—and full respect and power for everyone harmed by HIV.

“The HIV response cannot reach its full potential if leadership does not reflect the diversity of the communities most affected by the epidemic,” Carry said. “We need Black women leading organizations, directing research, shaping policy, overseeing funding decisions, and helping define the future of HIV prevention, treatment, and care.” This need holds true beyond HIV, getting to the core issue of so many social justice movements. “Every time a Black woman steps into a leadership role, she expands what is possible for someone else,” she said.

Houston said she was inspired by the words of Frederick Douglass: “Power concedes nothing without a demand.”

“We have to be very clear with our demands, and we need to be bold in our demands,” she told me. “We are not just asking for equity. We are asking for justice. And we have to be willing to lead the movements that will get us to justice.”

Tellingly, these kindred, yet individual, spirits gave the same response when I asked them, in jest, to tell me who they preferred: Nina Simone or Sade. Carry shared, “Nina breaks my soul open. [And] I have all due respect for Queen Sade.” Houston shared that she would have voted for Nina during the revolution and Sade during the (unseen) victory.

But neither of them would think to pit one Black woman against another. Because, as Houston tells us, there are no crabs in the barrel; the barrel is fake.

Onward. Together.

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