Grazell Howard is a living embodiment of the Black AIDS Institute’s motto of “Our People. Our Problem. Our Solution.” Clear-eyed about the failures of a movement to truly address the needs of those most impacted by the virus, her assessment of this moment in which Black and brown communities are still disproportionately affected by HIV is simple. 

“I think what we did, unintentionally, is we went to the largest disease-burdened group, which were men who have sex with men — and that’s fine, that’s what you’re supposed to do,” she said. “However, we never then came back and said, ‘It impacts all of us. We are all in it together.'”

As the Black AIDS Institute, or BAI, celebrates over 25 years of service to the community, Howard’s vision as managing director and chair of the organization’s Board is about meeting the entire Black community where it is now. And though ongoing, politically motivated rollbacks in funding and other support for this vital work may complicate things, she’s undaunted by the journey ahead.

“HIV 40 years ago is not HIV today,” Howard admits. “But what we have to do now is look at the messaging intergenerationally, look at the messaging intraracially, and then lay the truth on top.” 

BAI was founded as a nonprofit in 1999 by pioneering activist Phill Wilson to mobilize and educate Black American communities about HIV/AIDS treatment and care. Whereas the prevailing activism at the time was concentrated in gayborhoods that were largely white, Wilson recognized that without addressing the epidemic in Black communities, HIV/AIDS would never be eradicated. As the only “uniquely and unapologetically Black HIV think and do tank in America,” the organization continues to be on the front lines — whether that’s on the campuses of historically Black colleges and universities, at ballroom community gatherings, or at events like Essence Fest and the Pan African Film Festival. And what they are noticing is that there is still work to be done.

“There’s a popular misconception that HIV isn’t a problem anymore or it’s under control, especially since now, we live in a day where HIV isn’t necessarily a death sentence anymore like it used to be back in the day,” said Justin Proctor. As BAI’s senior prevention manager, he’s heavily involved in the group’s testing and other outreach activities. “A big part of what we do is just reminding people that not only is it not gone, but it affects our people majorly.”

According to the most recent CDC data, Black communities accounted for 38 percent of new HIV diagnoses and 37 percent of estimated new infections in 2022. Black women were diagnosed more often than other women, as were Black men as compared to non-Black men. Within trans communities, Black trans women and Black trans men shoulder the highest percentage of diagnoses among racial-ethnic groups, as well, according to 2019 CDC data. Black people are also significantly underrepresented in data about users of PrEP. 

Perhaps the biggest persisting challenge to BAI’s efforts is at the intersection of homophobia and stigma, which can also be heavily influenced by religion.

“Sometimes we see people who have had a bad experience with HIV/AIDS [education or care],” said Lauren Grayson, BAI’s community mobilization and HBCU specialist. “Sometimes it’s stigma that’s out here. We see people who aren’t willing to engage with us, and that’s okay, but I’m going to hand you a flyer anyway and have a blessed day.” 

Proctor attempts to actively confront such challenges in the field by being an example. 

“A lot of the times when we go to these things, people think I’m gay or they think I have HIV or both, and they’re very surprised to find out when I’m not,” he said. “And even though that sense of stigma and the assumption was there, once they find out, it’s the opposite. Their curiosity opens up, and then they’re like, ‘Well, dang, maybe I should pay attention to this more.’”

Then there is the general distrust some people in Black communities have of the health care system at large, considering generations of medical violence and exploitation enacted upon Black people. That distrust is certainly magnified now as the Trump administration significantly alters the U.S.’s national and international HIV response by cutting necessary funding — to the tune of millions — that supports research, community outreach, testing, treatment and more worldwide. Domestically, these cuts have caused local health departments and community groups to end some of the care they previously provided.

“But despite the current administration trying to get in our way, we’re showing up and we’re being bold and Black and loud in all that we do,” Grayson said.

  Grazell Howard, board chair and managing director of BAIIrvin Rivera (provided)

Proctor added: “It kind of helps with the community to see that even though they’re doing these things and they’re stripping these programs, the Black AIDS Institute is still out here fighting for us. We’re finding workarounds and loopholes. They close the door, we’re opening a window, and we’re still finding a way to get the work done.” 

And in so many ways, that is the history of BAI, Howard insists: finding a way or making one. 

“We were the canary in the mine,” she said. “We are the mobilizer. We were the ones who carried the weight during a time when it was uncertain.” Though the path forward right now may look a little different — “radically partnering intergenerationally and multi-generationally, being connected in a message that says HIV education and care is for everyone, and challenging the capitalistic side of pharma,” she added — the mission is the same.