William B. Carter
I am living with HIV and I am a clinical trial participant in a BEAT-HIV ATI study; I have had many questions about my health. The Position Paper has helped me talk with my doctor and researchers. Being a clinical trial participant has opened doors, and helped me to make history. It has afforded opportunities to tear down stigma and stereotypes and contribute to HIV research in honor of those who came before me. I feel like I am on a level playing field with researchers; I know what sorts of questions to ask about my labs and my health, and what to expect as we search for a cure. I get peace of mind.
-- William B. Carter, Co-chair, BEAT HIV Community Advisory Board
Do you have questions about research that seeks to find a cure for HIV? What role do analytical treatment Interruptions (ATIs) play in getting us closer to an HIV cure?
To help answer these questions about HIV-cure directed research, the BEAT-HIV Collaboratory Community Engagement Group just released a position paper addressing HIV cure-directed clinical research involving ATIs. It is entitled, "Joining Forces To Advance HIV Cure Research: A Position Paper on Cure-Directed Research and Analytical Treatment Interruptions, Including a Bill of Rights and Responsibilities for Participants and Study Staff.”
The position paper is written by people living with HIV & AIDS (PLWHA), researchers, healthcare providers, and advocates. It helps to clarify and explain HIV cure-directed clinical trials involving ATIs. As authored by community members in collaboration with clinical researchers, the position paper seeks to open up avenues for community engagement in HIV cure-directed research.
The position paper provides an opportunity to facilitate conversations among HIV researchers, potential trial participants, their partners, friends, families, and communities about ATIs and their crucial role in the search for an HIV cure.
The position paper offers five complementary modules:
- Module 1: What is an Analytical Treatment Interruption (ATI)? Why are ATIs used in HIV-cure directed research?
- Module 2: Considerations for Participation in HIV cure-directed studies
- Module 3: Considerations for navigating the Informed Consent Process in an HIV Cure-directed Study
- Module 4: Additional Social and Health Implications to Consider
- Module 5: Women and Cure-directed Clinical Research
Each of the five modules summarizes relevant issues concerning HIV cure-directed research and responds to a series of Frequently Asked Questions and Recommendations. Each module concludes with personal reflections from people who have participated in ATI studies.
An important feature of the position paper is the Participant and Staff Bill or Rights and Responsibilities, a document that should accompany the informed consent process for HIV cure-directed clinical studies.
The position paper is meant to serve as a live document to engage community stakeholders in the search for an HIV cure in collaboration with clinical researchers. As such, it will be updated as HIV science advances. The position paper complements the BEAT-HIV Collaboratory HIV Cure Research Education Video Series [https://beat-hiv.org/hiv-cure-education-series/].
For additional details, please view:
BEAT-HIV Position Paper on Cure-Directed Research and Analytical Treatment Interruption (download PDF)
BEAT-HIV Collaboratory HIV Cure Research Education Video Series