The annual HIV Cure Community Workshop

The annual Community HIV Cure Research Workshop, sponsored by Treatment Action Group (TAG), many of the Martin Delaney Collaboratory CABs (community advisory boards), and other advocacy groups, went virtual again this year, breaking up into three sessions—two sessions before the 2021 Conference on Retroviruses and Opportunistic Infections, on March 4–5; and one session after on March 16. The workshop sessions (available on YouTube) aim to foster dialogue between biomedical HIV cure researchers and community members in an effort to deepen understanding of the science behind the search for an HIV cure. Following are a few highlights.

Simon Collins provided an overview of HIV treatment interruption studies in the time of COVID-19. Several research teams have halted HIV research activities in the last year. For trials that continued during the pandemic, additional safeguards have been put in place to ensure safety of trial participants. For example, some research teams have included COVID-19 directly as part of the informed consent, modified exclusion criteria to reduce COVID-19-related risks, and integrated SARS-CoV-2 testing and vaccination as part of the trial schedule of events. The HIV cure research community has responded rapidly to new changes due to COVID-19 while prioritizing participant safety. COVID-19 has given scientists an opportunity to evaluate whether risks of HIV cure trials are justified and how we can continue to mitigate risks. Several HIV cure trials are expected to re-open in 2021–2022.

William B. Carter, the chair of the BEAT-HIV Collaboratory Community Advisory Board [] provided the perspective of an HIV cure research trial participant. Carter spoke about the importance of giving a voice to people who live with the virus and decide to contribute to the search towards an HIV cure. Recounting his personal journey, he discussed how he turned obstacles into possibilities in his life, and this carries now to his HIV cure research activism. Participating in an HIV cure trial has given him clarity and more energy to dedicate to community activism. He described his pleasant feeling of not having to take a pill every day and how participating in research has helped him tear down HIV stigma and demystify clinical research.

Christopher Peterson, from the Fred Hutchinson Cancer Research Center and the defeatHIV collaboratory (, provided an overview of gene therapy in HIV cure research. Gene therapy is the treatment of a disease by introducing or changing a gene within a cell that does not pass down to future generations. For HIV, new genes may be used to defend uninfected cells from virus entry or help clear out infected cells. Dr. Peterson discussed how several gene therapy approaches are borrowed from cancer, such as chimeric antigen receptor (CAR) T cells, that were approved in 2017 by the U.S. Food and Drug Administration for the treatment of acute lymphoblastic leukemia. Several CAR T cell products are expected to be tested towards an HIV cure in the coming years.

Kim Anthony-Gonda, MD, PhD, ASCP, and Boro Dropulić, PhD, MBA, from Lentigen Technology, Inc. [], discussed progress in moving duoCAR T cells to human testing. duoCAR T cells involve two chimeric antigen receptors—one to clear HIV-infected cells and the other to protect cells from HIV infection. duoCAR T cells have been highly effective against global HIV subtypes and have shown to be superior to monoCAR T cells. Preclinical studies also support the safety and efficacy of duoCAR T cells in animal models. A first-in-human phase I/II study is being planned to evaluate the safety and efficacy of duoCAR T cells in 18 ART-suppressed people living with HIV at the University of California, San Francisco (UCSF) []. Relatedly, an organization called Caring Cross [] is working to make gene therapy more globally accessible to resource-limited parts of the world.

Mike McCune, MD, PhD, from the Bill and Melinda Gates Foundation, discussed bringing safe, effective, and accessible curative interventions to limited parts of the world. A new collaboration exists between the U.S. National Institutes of Health (NIH) and the Gates Foundation to advance cell and gene therapy towards both sickle cell disease and HIV []. The goal is to find durable, safe, and accessible gene-based cures for HIV and sickle cell disease that can be scaled and implemented globally. A new HIV Cure Africa Acceleration Partnership (HCAAP) [] has also been created to propel innovations in this area.

Gary Steinkohl, Matt Sharp, and Adam Castillejo spoke movingly about the legacy of Timothy Ray Brown, the first person cured of HIV who recently passed away from leukemia. Timothy is perhaps the most famous example of a research participant coming out from the anonymity designed to protect participants. Known as “The Berlin Patient,” he shared his experiences with the world and advocated for cure research. Each of these men has also come out as a cure research participant like Timothy; what they shared about their motivations, which range from survival to hope for future generations, was thoughtful and poignant.

For more information:

Treatment Action Group’s Pre- and Post-CROI Community HIV Cure Research Workshop (2021):

Karine Dubé is an assistant professor at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill. She is a socio-behavioral scientist focused on integrating a patient/participant perspective to HIV cure-related research.

Michael Louella serves as the defeatHIV Community Engagement Program Manager and is based at the University of Washington and the Fred Hutchinson Cancer Research Center in Seattle.