PolicyLab

In 1981, the world was blindsided by a new virus that overwhelmingly impacted men who have sex with men, leading to the isolating and stigmatizing name Gay-Related Immune Deficiency or GRID.

Though it took a year for a more inclusive and accurate name for this virus to emerge—Acquired Immunodeficiency Syndrome (AIDS)—the importance of community-led and tailored prevention messaging and interventions was evident from the very onset of the HIV/AIDS epidemic.

In 1982, the Gay Men’s Health Crisis (GMHC) became the first community-based AIDS service organization in the country. Over four decades later, the World AIDS Day theme for 2024 is “Collective Action: Sustain and Accelerate HIV Progress,” underscoring the need to ensure that no communities are left behind in the fight against HIV/AIDS.

Today, we are fortunate to work alongside many organizations in Philadelphia working to provide quality care for people living with HIV/AIDS and innovative prevention programming for people at risk of acquiring HIV.

Here at Children’s Hospital of Philadelphia, our Adolescent Initiative provides a social work-driven interdisciplinary model of care for young people where all patients receiving HIV care and prevention are assigned a social worker. The social worker maintains frequent contact with patients and serves as a crucial part of the care team to help ensure patient centered care.

For example, our Status Neutral Adolescent Prevention Team (SNAP’T) program utilizes a community health worker model to meet youth where they are in their prevention and risk reduction journeys. They provide basic sexual and hygiene education, group activities, HIV testing, and linkage to care or needed services at community events and with community partners.

Despite advances in care and prevention, disparities in HIV acquisition still exist.

The National Institutes of Health estimates that HIV prevalence among young trans women ranges from 5-22% and research has demonstrated that they are less likely to be aware of, use, or adhere to pre-exposure prophylaxis (PrEP), a 99% effective HIV prevention medication. Additionally, young Black and Latino men who have sex with men have lower rates of PrEP use than their White peers.

It’s clear that we are still missing opportunities to reach these groups at greater risk. Effective HIV prevention programming requires meaningful participation from members of affected communities in the development of these programs. Good Participatory Practice can completely change what a research project looks like and it can help researchers better engage a larger community. In good relationships, the needs of the researchers AND the community are met. Three recent studies within CHOP’s Adolescent Initiative are striving to do just that.

Our Transcend, Triumph, and Thrive (3T) intervention centered community input that highlighted the most important issues for trans and gender expansive youth and young adults. Connecting with community health workers, participants created and worked toward both health and personal goals while receiving HIV prevention information including PrEP education.

Questions to Empower and Engage with PrEP (Queen-P) is in the formative phase, as we begin interviewing young trans women to develop and pilot an e-health decision support tool to help them make informed decisions about PrEP.

Finally, our Collaborative Care Prevention, Treatment, Navigation, Engagement, Resource (CC PrTNER) project is building on the success of our previous multi-site study (PUSH) to show how we can enhance our clinical care through an intervention where a patient is connected to a peer coach who can support them related to substance use and its impact on PrEP and HIV treatment adherence. Community members provided feedback related to outreach messaging and tactics to help enroll and engage with participants.

If we truly want to ensure no communities are left behind in the fight against HIV/AIDS, clinicians and researchers must continue to work with the real experts—community members—to shape the prevention landscape as we strive to end the HIV epidemic.