Celebration of the Dedicated Participants and Staff of the REPRIEVE Study in Pune, India
February 8, 2019—PUNE—Staff and nearly 140 participants in the REPRIEVE study gathered on February 8, 2019, at the BJGMC Clinical Trial Site for an awareness event and luncheon promoting healthy behaviors and engagement in care. The gathering featured banners on maintaining health as well as information about tobacco and alcohol use, messaging about exercise and a balanced diet, uplifting musical performances, and an energetic and very well-received open microphone forum for participants to share their experiences and perspectives if they wished.
REPRIEVE is a multi-center, multi-network, randomized, double blind, placebo controlled, AIDS Clinical Trial Network (ACTG) trial addressing whether taking a daily statin drug can help prevent major adverse cardiovascular events in people living with HIV who are over age 40, have a CD4 count higher than 100, have received ART for more than 6 months, and had a variable Atherosclerotic Cardiovascular Disease (ASCVD) risk score at enrollment. All three sites of the BWI-CTU consortium—Johns Hopkins University in Baltimore, Maryland; BJGMC in Pune, India; and Whitman-Walker-Health in Washington, DC—are enrolling participants in the trial. The BJGMC Clinical Research Site recruited 250 participants between August 2017 and January 2019, who will be followed for 96 months. More information about the study can be found on the REPRIEVE Trial website: http://www.reprievetrial.org
Participant retention can be real challenge in clinical trials, particularly in India where there are many barriers to maintaining care and considerable stigma associated with disease. So events such as this are important in helping to build a community focused on a shared health issue and in keeping people engaged in that community. Engaged participants are more knowledgeable about health and strategies to maintain it, are more likely to stay connected to the care they need, and often serve as health ambassadors in their communities. The event was coordinated and convened by Clinical Coordinator Dr. Sandesh Patil and the REPRIEVE Study Team. Speakers included leadership from the Clinical Research Site, Drs. Vidya Mave, Nishi Suryavanshi, and Nikhil Gupte as well as Site PI Dr. Shashikala Sangle. CCGHE’s Director Dr. Robert Bollinger and Deputy Director Dr. Amita Gupta also delivered remarks thanking participants for their contributions and study team members for their work on behalf of HIV patients, and acknowledging the enduring and effective research partnership between Johns Hopkins and BJGMC.
The most powerful part of the event was hearing from participants, who were enthusiastic and eager to share their perspectives about research and the REPRIEVE Team. Their stories were personal and heartfelt. One person viewed participation as a public service: “Being HIV infected, we cannot donate blood or any organ, however we can participate in clinical trials that address important public health concerns [for the] betterment of society and mankind.” Another participant explained how inclusion in the study offered rapid access to urgent lifesaving care: “. . . I had severe abdominal pain. I am thankful to the study team for prompt assistance in investigations, diagnosis and the swift surgery. I am here today only because of the study team.” One woman shared a particularly inspiring reflection on her decades-long journey with HIV: “I came know about my HIV-infected status when I was pregnant 20 years back. Today my son is graduating as an engineer. I am taking my medicines regularly. The study staff take very good care of us.”
The ultimate goal of research is to improve patient health, but often what’s lost in aggregated clinical data is the tremendous personal impact that study participation has for patients and their families. Gatherings among team members and participants help foster community and a shared mission to improve disease prevention, diagnosis, and treatment.