Vaccine trial volunteer works to empower her community, end HIV

Much of Baldwin’s volunteer work addresses food disparities. An avid gardener herself (she has created a small personal greenhouse and is cultivating several citrus trees), Baldwin is active in the Seattle Giving Garden Network, which supports Seattle-area gardeners working to supply food banks and street kitchens with local, organic produce.

She also has her sights set on a career in medicine.

“My parents had a lot of health issues while I was growing up, and I found myself wanting to become a physician someday,” Baldwin said.

As a prelude to applying to medical school, Baldwin is completing a fellowship through the Centers for Disease Control, focusing her studies on strategies to scale up HIV-prevention services, including increasing access to an injectable option, at local sexual health clinics. But she never expected that her interest in medicine would lead her to research

“Growing up, I had a lot of reservations about research,” Baldwin said.

Her understanding of the medical community’s historical harm of people in vulnerable communities, such as those in the Black and Native American communities, left Baldwin leery.

But now she’s helping build a better research future for people long overlooked by scientists. Close communication with VTU researchers and clinicians means that she’s up to date on HIV vaccine science and can explain to people how their involvement in HIV research can help address the ongoing epidemic.

A voice in HIV research

Baldwin was first introduced to the ongoing nature of the HIV epidemic while a student at Seattle Pacific University. At the time, she sat on the board of the Minority Association of Preprofessional Health Students club. Ro Yoon, an SVTU community educator, spoke to MAPHS members about HIV and the SVTU.

Yoon explained that HIV had never gone away. She described the burden that HIV still imposes, both locally and globally.

“It was the first time I had heard that there was still an epidemic since one of my mom’s sisters died of AIDS in the ’80s,” Baldwin said.

Yoon also explained that some communities are hit harder by HIV than others.

“It’s disproportionately affecting communities I see myself as being part of: Black and Brown communities, the LGBTQIA+ community, gender fluid and non-binary people,” Baldwin said. “That really opened my eyes. I thought, ‘There has to be a way I can get involved.’”

She also learned that the SVTU was formed to find ways to prevent and perhaps even cure HIV. Yoon helped Baldwin get more comfortable with the idea of research, explaining how studies could be designed to help the very communities historically damaged by unethical scientific practices.

Baldwin didn’t jump into research immediately, but when Yoon later invited Baldwin and other MAPHS members to learn more about the SVTU’s Community Advisory Board, she attended.

“It was a really eye-opening moment for me, to see what it looked like from a community perspective to engage in research, to learn about HIV, and to learn about the trials going on at the VTU and HIV Vaccine Trials Network,” Baldwin said. “One of the things I learned about being a member of the Community Advisory Board was that I had a voice.”

CAB members regularly meet with people involved in trials, from scientists to biostatisticians to nurses at trial sites, who present the latest science and answer CAB members’ questions. This allows CAB members to learn about — and provide input on — protocols and study designs for HIV trials. This close involvement made Baldwin grow more comfortable with the idea of research and trials involving human participants, she said.

Keeping people at the forefront of science

Now Baldwin meets with community members to educate them about HIV and introduce them to HIV research. She doesn’t shy away from hard topics, like historical scientific atrocities or how many people, including Black and Brown folks and women, have been overlooked in health research.

“We’re not just there to ask them to participate in research,” she said. “It's also, ‘Hey, we're also here to tell you more about what HIV is and how can you prevent it. Here are resources that you can take with you right now.’”

These can include information cards or condoms and lube.

“It's being able to have those really powerful and fruitful discussions around what it looks like for either their needs to be met or their questions to be answered,” Baldwin said.

She gives people facts that can help them here and now — whether they join a trial or not.

“Like, ‘Did you know at this point, the research says undetectable equals untransmittable?’” Baldwin said. “Someone who didn’t know that information before can now take it and share it with their community.”

This kind of fact-based information can also help lessen the stigma that still surrounds HIV, she said.

And while Baldwin is very excited about advancements in HIV science, particularly the potential of broadly neutralizing antibodies to prevent HIV infection, the people who stand to benefit are always at the forefront of her mind.

“The side that's really important to me as a community member is how do we implement [the technological breakthroughs]?” she said.

How to make a therapy accessible to everyone, including addressing its affordability, is a critical concern when it becomes available to the general public. How a new therapy is delivered — whether it’s injected or taken orally, whether it’s given daily or monthly or yearly — can also determine whether the people who need it can actually get it.

“We've already started to think about how the community would want to receive a new therapy so that it's a smooth handoff,” Baldwin said.

As she educated people about the SVTU, Baldwin also shares the wide-ranging impacts of HIV research.

“We explain that there’s a lot of really great work happening, and how that great work feeds into other types of research being conducted,” she said.

That science, and the vaccine trial infrastructure created by the HIV research networks, helped fast-track COVID-19 vaccines and ensure equitable access to the studies testing them. The SVTU now conducts COVID-19 studies in addition to HIV studies. The knowledge gained in this work also informs the development of products that prevent other types of infections, Baldwin noted.

She also values the education she’s received as a CAB member involved in a global movement. As a queer, cisgender Black woman in the Pacific Northwest, Baldwin has a unique perspective to offer. As a CAB member, she helps scientists in her area conduct research that’s culturally sensitive and responsive to the needs of their community.

Every year, her CAB meets with CABs around the world and she hears others’ equally unique perspectives. (Though they moved to virtual meetings during the height of the COVID-19 pandemic, the CABs usually meet in person.)

“I get to learn about other types of people and the other groups of people in communities that may be underrepresented in research, and learn their perspectives around what it looks like for them to participate in research and what it looks like to advocate for them,” she said.

The tenor of conversations about HIV research — and where they occur — can vary based on location and culture. For example, CAB members in Johannesburg, South Africa, may meet community members in churches, while in LGBTQ-friendly Capitol Hill in Seattle, they may speak in bars and clubs.

“That experience really opens your mind to who could benefit from a vaccine and how important it is to understand the different groups and populations and communities of people who can benefit,” Baldwin said. “It’s a very rich experience that you get.”