When Brooke Davidoff looks back on memories of her wedding, she’s not reminded of the wedding-day stress or the pressure of picking out the perfect flavored cake for her guests, but of how her life was changed forever very shortly after. Less than a month after the wedding, she found out she was pregnant, and in the weeks following she went to her first well-baby doctor’s appointment, filled with feelings of excitement and the nervousness of being a first time mom.
The last thing she expected was to be diagnosed with HIV. When recounting the experience, Brooke shares “I had no clue my life would change in so many ways after that cold Friday night appointment. I did not expect what I thought would break me, to help transform my life, and force me to find internal strength I never imagined possible. ”
Brooke is just one of the amazing community leaders that form the Academy’s Community Advisory Group (CAG), made up of dedicated individuals whose input ensures that the Academy’s programs and services support health care providers effectively. Each of these leaders, shaped by their unique experiences with HIV, have shared how much farther there is to go, highlighting the importance of representation, community engagement, and policy change to ultimately ensure equitable HIV care and accessible HIV prevention and treatment.
Voices For the Unheard
For some members, the heart of the work was in amplifying marginalized voices or those who aren’t featured as prominently in HIV awareness and education.
Brooke Davidoff emphasizes the need for heterosexual representation in HIV campaigns and full STD/STI panels for women who attend their regular OB/GYN checkups, especially for young, college-aged women. “Straight women don’t know [about the panels] because OB/GYNs don’t tell us,” she shares. Her blog posts allow her to connect with other women and advocate for more sexual health education for young women, especially when it comes to HIV.
Anna Fowlkes’ passion for education and advocacy shines through as she highlights that older adults are vulnerable due to a lack of knowledge surrounding HIV. In addition to the CAG, she regularly speaks to her peers to spread awareness, and even participated in a campaign in New York called “Age is Not a Condom.” When asked about her motivations for getting involved, she stated simply “If it happened to me, it could happen to a lot of older people, simply for what they didn’t know.”
Evan Hall’s experience with leading an STI/HIV satellite clinic at their university showed them how little young people are educated due to stigma, with many students sharing they were the first person they told their sexual history to. Often the youngest person in HIV advocacy spaces,
their mission is to reduce stigma sharing that “What we’re addressing with HIV isn’t a biomedical gap, but a social one.”
Grounded in Community
For other members, their deep community ties motivate them to engage deeply with advocacy and education.
For Janice Shirley, her background as a peer support specialist and patient advocate showed her how regularly people feel their providers lack patience and empathy, often feeling as though they’re being rushed in and out. In order to provide more support for people in her community, she founded a recovery house for men, and when asked about what motivates her involvement, she replied “Being of service is like paying your rent here on Earth.”
After being diagnosed in 1985, Kevin Packer immediately became involved in HIV education and later became a peer patient navigator. After several experiences where he personally had to educate his own doctors about what treatments he could and could not receive, he became extremely passionate about ensuring that all providers, regardless of specialty, have the fundamental knowledge to deliver the highest quality of care to every patient.
For Deborah Eastman, being diagnosed with HIV while hospitalized for cancer was a turning point that led her to begin learning everything she could and sharing it with other women facing the same uncertainty. Through support groups and advocacy networks, she has fought to ensure that people outside of the “priority populations” are not left behind. When asked what is one message she’d leave with providers, she replied “Learn. Even if it’s not your field, learn.”
Policy Shapers & Clinical Collaborators
Some CAG members focused their energy on changing the systems that shape people’s health, pushing for policies that dismantle barriers rather than reinforce them.
After testing positive, Caleb Brown’s passion for education and advocacy pushed him to go back to school, earning his Masters in Public Health to be better able to work directly in HIV prevention. Since then, he’s worked extensively in reducing stigma in clinics and even succeeded in getting departments of health services to change the requirements for the mpox vaccine to make it more accessible to vulnerable populations. When asked for one barrier to care he’d like
to see overcome, he replied ” Providers must confront their own bias, or risk becoming a barrier to care themselves.”
Joe Robinson’s experience in clinical research gives him a unique perspective on the relationship between providers and patients, allowing him to give feedback that helps clinicians stay both care- and community-focused. He emphasizes that just because HIV has become more treatable doesn’t mean it’s become any less important. When asked what is one message he would leave with providers, he responded “I’m a name, not a number.”
Stronger Together
Each member of the Academy’s CAG contributes a wealth of personal knowledge, passion, dedication, and commitment to ending the HIV epidemic and to ensuring providers have the tools to achieve excellence in HIV care and prevention. Together, they remind us that true progress comes when lived experience and professional expertise unite to guide the future of HIV.
