The Community Scientific Sub-committee

Jan 01, 1970

[Spotlight originally posted November, 2011]

The Community Scientific Subcommittee represents community concerns and issues on ACTG science committees and protocol teams. It is a big commitment for a small group of volunteers. Recently, the CSS welcomed several members to the group. Some were former members and some were first time applicants. The ACTG community includes many dedicated volunteers, and the CSS is only one way in which they contribute. Two of the current members share their stories.

Eric Lawrence has a long history with the ACTG scientific community. Beginning as a local CAB member at Washington University, St. Louis, USA in 1999, he went on to become an advocate for clinical trials as a CCG (Community Constituency Group) member and then a second term as a member of NCAB (Network Community Advisory Board), in which he served as co-chair of the committee. After a 3-year break, as a policy advocate for the AIDS Foundation of Chicago, Eric was recently selected to serve a third term on the Community Scientific Subcommittee (CSS). When asked why he does this, his answer is “It’s simple; I am alive today because of great science and the tireless effort of all those wonderful people who previously advocated on my behalf, many of them no longer with us. It is my honor and duty to ensure that there will always be good life-sustaining medications available for those behind me until there is a cure.”

In January 2010, Ashish Gupta was introduced to the ACTG—University of California San Francisco clinical research site when he needed to start HIV medications. Ashish had been positive for nearly 10 years. His primary care doctor is also one of the key researchers in the field, and he listened to her recommendation and became part of a study. Ashish said he was very impressed by the professionalism of the team and the level of care that he received. Within a few months he had referred several friends for studies as well. The study team’s research nurse suggested to Ashish that he attend a Community Advisory Board (CAB) meeting. The result was an immediate interest in reviewing protocols and understanding the science behind the studies. “As an active CAB member I’ve been able provide some input into the studies we’ve looked at, but more importantly, the information and understanding I’ve gained has allowed me to help people in my community and other affected communities make informed choices about possible treatment.”