A practice application for a job with the AIDS Clinical Trials Group (ACTG) led Allegra Cermak to the position of Community Coordinator, a job she has held for 13 years.
“I was selling my home with my sister in St. Louis (Missouri, USA) in 2000 and I applied to the job in Silver Spring (Maryland, USA) as practice for my job search,” Cermak says. “The ACTG’s Community Advisory Boards (CAB) asked leadership for full time support. Social and Scientific Systems (SSS), the ACTG’s Network Coordinating Center in Silver Spring, knew who I was because I had been Chair of the Washington University St. Louis site’s CAB and Chair of the ACTG’s Community Scientific Subcommittee (CSS).”
Each of the ACTG’s 73 sites has CAB participation, either as an individual CAB or as part of a Clinical Trials Unit (CTU) CAB made up of individuals from several ACTG sites in one city. CABs include community members as well as former and current clinical trial participants. Members can express interest in an officer position within the CAB as well as being their CAB’s representative to the ACTG’s Global Community Advisory Board (GCAB).
CSS is an autonomous subcommittee of the GCAB. Community members who are interested in becoming involved must apply for one of 28 positions on CSS. Cermak says 80 percent of CSS representatives must be ACTG CAB members. CSS terms last for four years. CSS reps serve on the ACTG’s many committees as well as each study team, providing the community’s view of the research being proposed and conducted.
Cermak moved to the east coast in 2000 and has been meeting the needs of the ACTG’s community members ever since. Her role as Community Coordinator places her in the position of connecting with each of the more than 60 CABS and responding to their request for trainings. She has traveled to most of the ACTG’s 50 domestic sites and 15 of the international ones, most recently the three locations in India. She also produces a quarterly newsletter featuring updates from each of the CABs and guest columns from members sharing their CABs’ triumphs and challenges.
The road to Silver Spring and her role within the ACTG was unexpected. Holding degrees in French, sculpture and fiber arts, Cermak was volunteering with the HIV/AIDS advocacy group ACT UP in St. Louis. In 1992, ACT UP saw an ad for clinical trials at the ACTG’s site at Washington University, but wondered if the scientific jargon was hindering comprehension and recruitment.
“The ACT UP chapter in St. Louis was education-based and so we volunteered to rewrite the ads for the ACTG’s clinical trials in lay language,” Cermak says. “The CAB then asked two of us to continue attending monthly meetings as ACT UP representatives. We were already publishing a newsletter and had a lecture series to make the information more accessible.”
Cermak eventually became the CAB chair at Washington University, the role she held when she applied for the Community Coordinator position. Her familiarity with the CAB and CSS structure made her an attractive candidate for the job.
Looking to the future of the ACTG, Cermak is passionate about increasing the number of women enrolled in clinical trials. International ACTG sites have no problem enrolling women, while US locations have found men tend to gravitate toward research studies far more than women.
“When I first became involved with the ACTG in St. Louis in 1992 I noticed there were not many women in the Washington University CAB,” Cermak says. “I feel health care professionals are far more worried about pitching clinical trials to their female patients. Women just need to be approached with clear information. Women are not less intelligent or altruistic than men.”
Sharon Maxwell joined the ACTG’s St. Louis CAB in 1995 and gravitated toward Cermak since they were two of the few women involved. She and Cermak serve as the ACTG’s representatives to the Women’s HIV Research Collaborative (WHRC). Maxwell, the ACTG’s GCAB Co-Chair, is also the WHRC’s Co-Chair.
“If there is one thing I can say about Allegra – she cares for her HIV community,” Maxwell says. “Allegra was one of the first affected people I met after my diagnosis. It was at a CAB meeting at Washington University in St. Louis. Her love of art, swimming, plays and good poetry brought us together in this world of AIDS. She is one of the most caring and compassionate people I know…providing her community with bottled water or chocolate at all our early meetings. There is no one like her!”
The WHRC is a working group of the Legacy Project. The Legacy Project works nationally to increase awareness of HIV research by addressing factors that influence participation of historically underrepresented communities, like women. WHRC brings together a “diverse and growing group of individuals who are infected, uninfected and affected by HIV. Their interests, careers and experiences have led them to be involved in ensuring that culturally appropriate HIV clinical research addresses the lifespan of women.”
“I have the pleasure of working with Allegra on two working groups, the WHRC and our Creating Awareness through Art (CATA) project,” says Jessica Mooney, the Legacy Project’s Community Engagement Officer and Project Manager. “Allegra brings a range of depth of experience from her backgrounds in art and HIV advocacy that contribute to unique and contextual ways of understanding the HIV epidemic. She is always participatory and actively involved in discussions and frequently provides critical insights into how to better reach disproportionately impacted populations. It is truly a pleasure to work with her.”
Working alongside her counterparts at the other HIV/AIDS networks and service organizations in the WHRC and within the ACTG, Cermak hopes to see more studies geared toward women being conducted by the ACTG’s investigators and more U.S. women enrolling. It’s a career path she could not have foreseen nearly two decades ago in St. Louis, but a role she finds personally and professionally fulfilling.
“The community has really played a part in getting certain populations into research studies,” Cermak says. “I help the ACTG community members organize their presentations for our annual meeting and our retreats. Women’s health is a top priority.”
“I really do enjoy meeting people within the Network during our ACTG retreats or when I travel to individual sites,” Cermak continues. “After I visit a site and staff there become familiar with who I am, I find that it makes people more likely to reach out in the future.”