The start to HIV Cure Research Day

HIV Cure Research Day, established on December 14, 2016 in Durham, NC, was born out of a deeply rooted commitment to addressing the HIV epidemic by fostering community ownership, trust, and awareness about cure research. The journey to this significant milestone began with an innovative research project aimed at leveraging **crowdsourcing** to engage community members in conversations about HIV cure research.

In the early days of this project, my team and I held focus group discussions and design sprint sessions with community members in Durham, North Carolina. These sessions sought to understand the community's concerns, priorities, and hopes regarding HIV cure research. What emerged was a powerful narrative: Black and Brown communities demanded a cure that was not only effective but also affordable and accessible. They called for a collaborative process that centered community ownership and insisted on rebuilding trust between scientists and the communities historically marginalized and mistreated by scientific institutions.

Addressing Historical Mistrust and Promoting Community Ownership

The long legacy of exploitation in scientific research, from the Tuskegee Syphilis Study to unethical experiments on vulnerable populations, loomed large in these discussions. Community members highlighted the importance of building genuine trust by ensuring transparency, equity, and mutual respect between researchers and participants.

Beyond trust, they emphasized the need for community-centered solutions. Any efforts to find a cure for HIV, they argued, must include the voices and leadership of those most affected by the epidemic. This commitment to community-driven innovation became a cornerstone of our work.

Engaging Culture and Creativity

The community also inspired us to think outside the box about engagement strategies. They encouraged us to leverage popular culture, social media, Hip-hop, artists, local businesses, and community organizations to amplify the message of HIV cure research. This led to the creation of a dynamic and inclusive project title: 2BeatHIV. The name reflected both the urgency of beating the HIV epidemic and the collaborative spirit of our approach.

We launched our first crowdsourcing contest with a simple but profound question:

“What does HIV cure mean to you?”

Community members were invited to submit creative content—poems, videos, visual art, and more—that answered this prompt. A panel of judges, including scientists and community leaders, evaluated the submissions. The top three finalists were celebrated online and received prizes, highlighting their creativity and perspectives.

The first event we hosted (December 14, 2015) was at a Black owned business in downtown Durham called Beyu Cafe, in collaboration with Iset Excelsior who curated a hip hop cypher with artists, Median, Shirlette Ammons and Nnena Ukwu. The cypher reflected on a community conversation we had with attendees where we discussed conspiracy theories about HIV cure. The event was a success!

Expanding the Movement

The success of this initial contest inspired us to continue hosting crowdsourcing contests, developing educational materials, and organizing community events to raise awareness about HIV cure research. Our events didn’t just focus on cure science; they also emphasized the importance of HIV testing, PrEP (pre-exposure prophylaxis), and treatment to prevent transmission and improve health outcomes.

It was through this sustained community engagement that the idea for HIV Cure Research Day was born. The goal of the day was not just to educate but also to celebrate the progress in cure research and to honor the resilience of communities most affected by the epidemic.

Building a Legacy

On December 14, 2016, HIV Cure Research Day was proclaimed by the Durham County Board of Commissioners and has since grown into a platform for education, advocacy, and collaboration. It underscores the importance of bridging the gap between scientists and communities, breaking down barriers of mistrust, and centering the voices of those who have historically been excluded from the conversation.

As I reflect on this journey, I am proud of what we have accomplished together. HIV Cure Research Day is more than an event; it is a movement that amplifies the power of collective action and the importance of keeping equity and accessibility at the heart of scientific innovation. Together, we are not only imagining a world without HIV but actively building the path to get there.