People living with HIV share their experiences as cure research participants

To develop an HIV cure, most clinical studies involve an analytical treatment interruption (ATI)—a study participant who is living with HIV voluntarily temporarily stops taking their antiretroviral treatment (ART) regimen. Currently, this is the only way to determine if a potential cure strategy will work without ART.

ATI trials hold potential promise for a cure but have potential risk for participants, who might experience the unexpected return of virus, and to their partners, who might become vulnerable to HIV acquisition.

Continued work to develop effective cure strategies will require more and larger trials involving ATIs in order to expand the diversity of participants so that the results will benefit all communities. An HIV cure must be a cure that works for all. As research continues, the health and safety of participants must be ensured.

A team of community advocates is working with Positively Aware, sharing their experience and insights as HIV cure research participants in this series, Partners in Research.

As clinicians and participants in cure research, we advocate for a Participant Readiness and Resilience framework to help ensure that HIV cure research remains acceptable to community. Each HIV cure trial experience is unique, so we envision a comprehensive program that supports participants, their partners and family members during their entire journey that provides the following:

  • Trusted and communicative research teams to help participants navigate intense, complex research protocols and the uncertainty and anxiety the cure trial might entail.
  • A modernized informed consent process that provides understandable and easily digestible information about complex topics that are easily accessible to diverse groups and learning styles.
  • Assessments of the understanding and psychosocial readiness of participants and their partner(s) before and during ATIs to minimize psychological harms.
  • On-demand and low barrier psychosocial support as needed by participants or partners.
  • Sharing of outcomes and findings directly with the participants who made the research possible at no charge and in ways accessible to them and with the communities in which the research was conducted.

Get involved in HIV cure-related research 

For a list of ongoing and past HIV trials, GO TO

Share your thoughts of the Patient Readiness and Resilience Framework.

Clark Hawley

Feeling good about being part of the scientific process

I am a retired teacher; I taught first through fourth grade. I also helped children of migrant farmworkers keep up with their classmates in school for 15 years before I retired. That's the career stuff. Then there was not realizing that I was a gay man until I was 36 years old after being married at 23. I have two grown sons, and have been in a loving relationship for almost 10 years.

Read Clark’s experience here.


An HIV-negative partner’s perspective

We had been together for 25 years. Together, we had seen the HIV therapeutic landscape change dramatically—from medications that made him sick often, through complications with early protease inhibitors and finally to our nearly normal lives with him taking mostly benign ART once a day.

Read Anonymous' experience here.

Richard Strange

Serial ATI participation

I am an 81-year-old white, gay male who first tested HIV-positive in January 1993. My initial instinct was to get involved in the scientific work to defeat this virus by volunteering for trials at the NIH [National Institutes of Health]. Over the course of 15 years I was a participant in 10 studies, mainly phase 1 drug trials. In one trial, I was one of the first two humans to receive the drug after testing in non-human primates! My rationale then was, as it is now—if not me, then who?”

Read Richard's experience here.

Thomas J. Villa

ATI: ‘A trial interruptus’

Over the years I have participated in perhaps two dozen clinical studies, so participation in an HIV cure-related clinical trial was a logical step to contribute to my community.

Read Thomas' experience here.

A journey approach to HIV cure research

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

Download: A journey approach to HIV cure research

About the contributing editors

Thomas J. Villa works to help end the HIV epidemic as a writer, community advisor and serial participant in HIV clinical research.

Bill Freshwater is a long-term survivor and community activist living in Philadelphia and Maryland’s Eastern Shore.

Jeff Taylor has been living with HIV for 40 years and is director of the HIV+Aging Research Project-Palm Springs (HARP-PS).

Gail Graham is a global representative for Johns Hopkins University’s Community Advisory Board AIDS Clinical Trials Network and a patient professor for the University of Maryland’s PATIENTS Program. She is also the proud mom of two sons and grandma of one.

John Sauceda is a health psychologist who studies mental health and health disparities related to HIV treatment, as well as factors that affect consent and understanding the psychological experiences of participants going through HIV cure trials.

Karine Dubé works at the intersection of biomedical research, socio-behavioral sciences, ethics and patient/community engagement in HIV cure research in the U.S. and in South Africa.