Drawing from their experience, long-term survivors offer their insight for researchers

This marks the fourth and final installment of the series sharing our perspectives and experiences as HIV cure-related research participants. Our aim has been to help support HIV cure clinical trials and ensure the safety and well-being of future analytical treatment interruption (ATI) trial participants, their partners and affected communities.

In Part 1, we focused on community response to the HIV epidemic and why some of us have gotten involved with HIV cure research.

Part 2 featured a participant readiness and resilience framework, published together with POSITIVELY AWARE’s annual HIV Drug Guide. This framework aims to better support the mental and psychosocial well-being of HIV cure research participants and their partners before, during and after ATI trials.

Part 3 highlighted the growing family of people who have achieved cure or long-term suppression off ART, as well as various psychosocial aspects of HIV cure. This fourth and last issue examines variable outcomes of HIV cure research, and the need to prepare now for continued research success.

Our calls to action, informed by lived experiences

We are part of the community of people living with HIV (PLWH) who have volunteered to participate in early-stage clinical trials of HIV cure strategies that included an ATI. In this series, we have invited people from diverse backgrounds to share their lived experiences and to highlight our community response to the HIV epidemic through HIV cure-related research.

Together, we have advocated for a comprehensive support program around ATI participants to preserve the long-term community trust around HIV cure trials. We have called to increase diversity of participants to ensure research findings benefit all communities, to minimize physical and psychosocial risks, and help ensure an adequate number of participants for future trials.

How to get involved in HIV cure-related research

As it comes to a conclusion, we hope you have enjoyed reading this community-driven series and that you will remain engaged in research efforts to end HIV. Here’s how you can get involved in HIV-related research:

Gary Steinkohl

'Boston Patient B'

March 11, 2013 was like most other days for me, with one significant exception. As I was reaching for my daily HIV meds, I remembered, no HIV meds today, and hopefully never again.

Read Gary's experience here.

Andrea Lamour-Harrington

Investing in community so community can invest in your research

I am a 56-year-old ordained minister, mother, activist and health department employee who happens to have been living with HIV since December 12, 1988. Over those years, I have been witness to advances in medical research that have kept me alive. If I could safely participate in a clinical trial that would help find answers to scientific questions about my health, and help the people coming behind me, then my life will have fulfilled its purpose. I want to help others to heal. 

Read Andrea's experience here.

Luis Canales

Moving beyond uncertainty

I’m a choreographer, performance artist and community activist. I manage a kitchen in North Beach, California, an acrobatic circus and dinner theater. I’m chunky, funky, thick, phat and all that. I also volunteer for nonprofit organizations. I’ve been a participant in clinical trials for HIV cure research since 2014.

Read Luis' experience here.

Elements of Comprehensive Participant Readiness and Resilience Framework — A journey approach to HIV cure research

Creating a framework that supports study participants throughout their experience—and beyond

To Download a PDF, click here

The contributing editors

Thomas J. Villa works to help end the HIV epidemic as a writer and serial participant in HIV clinical research. He serves on the ACTG Partner Protections Working Group and is a Community Advisor to both the HOPE and RID HIV Martin Delaney Collaboratories for HIV Cure Research.

Karine Dubé works at the intersection of biomedical research, socio-behavioral sciences, ethics, and patient/community engagement in HIV cure research in the United States and South Africa. Karine is passionate about centering the voices of patients/participants in HIV cure-related research across the lifespan.

Get involved in HIV cure-related research 

For a list of ongoing and past HIV trials, GO TO treatmentactiongroup.org/cure/trials

Share your thoughts of the Patient Readiness and Resilience Framework.