CABs History

History of CABs

Presented by Donald I. Abrams, M. D.
It’s an interesting story. In 1985, the mayor of San Francisco approached the chairman of the AIDS program at San Francisco General Hospital (SFGH) and said "you need to relate better to the physicians in the community who are now caring for people with AIDS." In response, a group of physicians caring for AIDS patients in the community was formed. This group was initially called the County Community Consortium (CCC) because it was a coming together of doctors at the county hospital—the AIDS center, and the community physicians. Our goals were information exchange and informing community physicians about what research we were doing. The CCC met monthly to exchange educational information and to talk about our studies. After a few months the community doctors said they could do research in their practices too.

In 1986, the Community Consortium (CC—we dropped the word "county") developed the first so called "community-based clinical trial." This trial was designed to discern if patients should be given preventive treatments after their first episode of Pneumocystis pneumonia—one of the first trials of PCP prophylaxis since little was known and every doctor seemed to be doing it differently.

After visiting the CC, this interesting idea intrigued New Yorkers like Mathilde Krim, Ph.D., President of AmFAR and Joseph Sonnabend, M.D., one of the major doctors in the Village, so much that they attempted to form a similar AIDS doctors’ consortium in New York. Because it was difficult to engage many NY doctors who cared for AIDS patients to do clinical trials, they, instead, organized a new group called the Community Research Initiative (CRI) under an organization called the PWA (people living with AIDS) Coalition.

The San Francisco group was comprised of all doctors. The New York group was a mixed group with a few doctors, but mainly people living with HIV/AIDS. Historically, this was when Admiral Watkins and his AIDS Commission were touring the country to learn about the disease. While in San Francisco, I explained the concept of community-based clinical trials to the Commission. When they visited New York, the CRI put on a very well-orchestrated presentation on community-based clinical trials and suddenly, as a result of their public relations expertise, the CRI became nationally known.

Meanwhile, the CC, which is now 200 doctors caring for PWAs kept meeting. In 1997-1998, when a growing AIDS activist community in San Francisco advocated hard for more community-based clinical trials, they had became aware of the New York group and wanted to have a CRI in San Francisco. By this time, the CC had finished an aerosolized pentamidine study which was leading to a publication in the New England Journal of Medicine and the FDA had approved inhaled pentamidine as a prophylaxis for PCP. Activists in San Francisco, however wanted to participate in the research process and formed the Community Research Alliance (CRA), modeled after the CRI in New York. The CRA eventually merged with Project Inform. So, ironically, the New York CRI model, which basically developed out of San Francisco CC model, them flipped back to California as the Community Research Alliance.

Because of increasing confusion as to just who was "community" in community-based clinical trials, the CC established an organizational task force which developed a policy statement and redefined the "Community Consortium" as a group of licensed health care providers in good standing. Then an Executive Board, a Scientific Advisory Committee, and a Community Advisory Forum were all established in 1988 (the year before the CPCRA was started).

The first community advisory board of the CC was comprised of adversarial activists; however, later other more supportive members and some of my own patients were added. Finally, the San Francisco CAB became a formal established structure in 1988. Soon, not only the CC, but the ACTG (AIDS Clinical Trials Group) and CFAR (Center for AIDS Research) program all decided to have Community Advisory Boards.

So we’re sort of proud that that’s how the first CAB, that we’re aware of, was set up. Now, the concept of CAB is something we need to look at; because there are a limited number of people who are willing, years later, to volunteer and dedicate time and energy to participate on these boards.