Insights from the United States Conference on HIV/AIDs (USCHA)
The United States Conference on HIV/AIDS (USCHA) is the largest annual gathering of the HIV community in the country. It brings together thousands of participants from across multiple and intersecting identities—people living with HIV/AIDS (PLWHA), advocates, policy makers, government, and CBOs to address the ongoing challenges of HIV/AIDS and work toward ending the epidemic in the U.S. This year, the conference took place in New Orleans, Louisiana, under the theme “Southern Joy.” To paraphrase Dafina Ward, Executive Director of Southern AID Coalition, in the opening plenary session, “Southern Joy is not passive, or simply about reveling in pleasure and happiness, Southern Joy is activism and community engagement.”
As a newcomer to the HIV space, I’ve noticed that USCHA stands out as one of the few, if not the only, conferences that focuses on more than just patients. It highlights the whole person and their active role in overcoming barriers to care and treatment that extend beyond medication, emphasizing the social determinants of health (SDOH).
More than four decades ago, the Denver Principles identified these very attributes as the keys to addressing the HIV epidemic. They made the following proclamations, which became the foundation of the HIV response:
- Lived experience: Effective strategies to address illnesses and health challenges involve people with lived experience to ensure sustainable, meaningful outcomes, embodying the principle of “nothing about us, without us.”
- Whole person health: Most of people’s health outcomes can’t be explained by the concept of “patients”, as people live, work, and play in a full community context that explains more than 80% of health outcomes. Best practices in programs require addressing the full array of social factors that explain health outcomes.
The HIV community has long embraced this model. HIV care guided by the Denver Principles considers the medical, social, mental, and environmental factors that affect well-being. People are not viewed as patients, but as individuals shaped by their communities. It recognizes the intersections of race, gender identity, socioeconomic background, and other SDOH. This approach is crucial for understanding the broader context of patients’ lives and can help identify and address behaviors that prevent or slow the progression of illness over a lifetime. Research increasingly shows that behaviors, environments, and policies play a major role in maintaining health and managing chronic conditions.
Excerpts from the Denver Principles
THE DENVER PRINCIPLES
(Statement from the advisory committee of the People with AIDS) We condemn attempts to label us as “victims,” a term which implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
RECOMMENDATIONS FOR PEOPLE WITH AIDS
- Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
- Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
- Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
Other therapeutic areas can gain valuable insights from the HIV community’s approach, particularly in identifying and addressing unmet patient needs. Government agencies such as the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC) have already emphasized the importance of whole-person care. The private sector, especially the pharmaceutical industry, must follow suit. By centering the lived experience, healthcare stakeholders can co-create more effective prevention and treatment strategies. This collaborative approach ensures that patient experiences, preferences, and challenges are fully integrated into the solutions designed to serve them.
Additionally, any proposed strategies, tactics and outcomes should be rigorously “pressure-tested” by the community itself—patients, caregivers, and advocates. This step is crucial in ensuring that the strategies not only work in theory, but are practical, sustainable, and accessible in real-world settings. By engaging patients throughout the process, healthcare stakeholders can identify potential barriers early on and adjust approaches as needed.
The conference’s location and theme were also deliberate, underscoring the heightened disparities in HIV outcomes in the southern United States. Eight of the ten states with the highest HIV rates are in the South, making the region a critical focus for addressing the epidemic. The geography reinforced a main point of the meeting’s message: feedback from patients must not be treated as a one-time checkpoint, but rather as an ongoing and integral part of the improvement process in the places and for the people that matter most.