A Voice for the Community: Pharmacy Professor Serves on Advisory Board for Global HIV Vaccine Study

July 25, 2016

Since 2007, St. John Fisher College Wegmans School of Pharmacy faculty member Dr. Ramil Sapinoro has served as a member of the Community Advisory Board for the Rochester Victory Alliance. Through his work on the board, Sapinoro has helped researchers at RVA, the University of Rochester’s HIV vaccine clinical trials unit, review language and information distributed to the community about their studies.

Ramil Sapinoro

Ramil Sapinoro

Last fall, when the RVA was selected by the HIV Vaccine Trials Network (HVTN) and the HIV Prevention Trials Network (HPTN) to serve as one of the 15 sites in North America for their new Antibody Mediated Prevention (AMP) Study, Sapinoro was tapped to join the trial’s Global Community Advisory Committee.

The AMP Study (also known as HVTN 704/HPTN 085) is testing whether the antibody VRC-01 can prevent HIV—and its many different subtypes—from infecting cells.

“The study is a fairly different take on what we call traditional vaccine studies, in that it’s more of a prevention tool,” Sapinoro said. “The antibody will be provided to individuals to see if this passive immunization can prevent or block the infection.”

The AMP Study is being conducted in the U.S., Brazil, and Peru, and is hoping to enroll 2,700 men or transgender persons who have intercourse with men. At RVA, researchers are looking for more than 80 individuals to participate in the study.

Sapinoro’s work with RVA began while he pursued his doctoral degree at the University. There, he studied microbiology and immunology, and conducted HIV vaccine research for his dissertation. As a member of the AMP Study’s Global Community Advisory Board, he draws not only on his clinical knowledge, but his unique perspective as a past study subject. In 2007, Sapinoro volunteered to participate in a clinical trial through RVA, to gain a better understanding of the experience individuals have when they engage in a study.

“Not only do I understand the science behind it, but I know what it takes to be in a study,” he said. “I can really speak to both sides.”

It’s an important point, given the commitment level for the AMP Study. The vaccine is administered through an IV in hour-long sessions, and requires a nearly two-year participation.

“We needed to make sure that the information about the study and commitment was easy to understand,” Sapinoro explained. “We also looked to break down stereotypes about vaccine trials in general, so people wouldn’t be afraid to participate.”

To that end, the advisory team—made up of nearly 30 physicians, researchers, past trial participants, and community members—met regularly to discuss the informational and promotional materials that would be distributed to the community. The team reviewed scripts for videos found on the AMP Study website, vetted information being shared on different topics in print materials, and offered feedback on giveaways used to entice volunteers to enter the study.

Through Sapinoro’s work on the board, he was also asked to participate in the Protocol Review Team, which was charged with reviewing the language on consent forms to ensure that community concerns were being met.

With much of the hard work behind them, Sapinoro said that the advisory board is now focused on learning how enrollment for the study is progressing at each site, assessing what outreach methods are working well, and which methods can be improved upon.

He also remains an active advocate for RVA, working with the organization to support members of the population who are disproportionately affected by HIV.

“RVA does many different types of education in community,” he said. “We’re looking to help individuals overcome barriers to health care in an effort to prevent infection, and if they are infected, help them get the medication and care they need.”