An Academic and an Advocate

When you learn about Liz Barr’s educational background, it comes as no surprise that she is turning her academic accolades into advocacy.

Barr holds a bachelor’s degree in art as activism as well as a second bachelor’s and a master’s degree in women and gender studies. She is currently pursuing her doctoral degree in rhetoric, politics, and culture at the University of Wisconsin, Madison, USA. Her introduction to the AIDS Clinical Trials Group (ACTG) Network came as a result of a class assignment.

“I was completing an independent study in 2009 with a professor who was part of ACT UP,” Barr explains of the HIV/AIDS advocacy group. “We were studying ACT UP campaigns from the 1990s and this inspired me to want to know what was happening today.”

Formerly of Baltimore, Maryland, USA, one of Barr’s friends brought her to a meeting of the ACTG’s Community Advisory Board (CAB) at the Institute of Human Virology Baltimore Treatment Clinical Research Site. Each of the ACTG’s 75 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. Even though she completed her independent study, Barr was intrigued by the work being done at the CAB and joined.

Two years later in 2011, she applied for and was selected as a representative to the ACTG’s Community Scientific Subcommittee (CSS). Community members who are interested in becoming involved must apply for one of 28 positions on CSS. 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. Barr moved to Madison in the fall of 2012 to begin her doctoral program, but vowed to continue her involvement with the ACTG.

“I never considered not staying involved,” Barr says.

One of the reasons Barr cites for keeping her involved with the ACTG despite her grueling doctoral schedule is the sense that her feedback on studies is genuinely considered and, at times, leads to study design changes.

“The community members on studies can provide researchers and the rest of the study team with personal experience,” Barr says. “I am the CSS rep on a study which initially involved using a vaginal cup to collect samples. I shared the community’s concern that women might not want to use a vaginal cup and a vaginal ring simultaneously and the study was revised. When I see researchers nodding and taking notes when I share my thoughts, I feel listened to. Community members and researchers are a team and they come to research from different perspectives.”

Drawing on her extensive experience in women and gender studies, Barr took time in between her doctoral classes to draft a letter to ACTG leadership about the inclusion of women in more of the Network’s clinical trials.

“There is less enrollment of women in research studies in this country than in studies abroad,” Barr says. “This frustrates many of us and I want to move from frustration to action.”

The letter comes from the CSS and the Network’s Global Community Advisory Board (GCAB). Since HIV affects women differently than men, the letter also asks for sex comparisons as primary and secondary endpoints for all ACTG studies. This is a goal shared by the Women’s Health Inter-Network Scientific Committee (WHISC). The ACTG’s Susan Cohn, MD, MPH, and Cindy Firnhaber, MD, are Co-Chair and Vice Co-Chair of WHISC respectively. They work closely with Arlene Bardeguez, MD, and Mary Paul, MD, the WHISC Co-Chair and Vice Co-Chair respectively from the International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) group. The primary mission of the WHISC is to develop optimal strategies for the prevention and treatment of HIV disease and related complications among women and to determine the pathogenesis of manifestations that are unique to women.

“It is so crucial to understand what the community thinks is important and what kinds of studies women are interested in participating in,” says Cohn, an investigator at the ACTG’s Northwestern University Clinical Research Site in Chicago, Illinois, USA, and Co-Chair of the A5316 study Evaluating Pharmacokinetic Interactions with Vaginal Ring Contraceptives and Antiretroviral Therapy. “Liz has done a fabulous job articulating the concerns of the CAB, and is a valued, respected member of the WHISC, the A5316 Protocol Team, the CSS and GCAB.”

Firnhaber, Technical Director of the ACTG’s Clinical HIV Research Unit in Johannesburg, South Africa, and Manager of the Cervical Cancer Program at Right to Care, a South African non-profit involved in the implementation and strengthening of care for HIV infected people, says the HIV epidemic in Africa is 65 percent women and between 25-30 percent women in the US.

“What I admire about Liz is her passion and incredible energy toward women’s health,” says Firnhaber. “Liz is confident and articulate and not afraid to keep us focused on the task at hand.”

Barr is also a representative to the Women’s HIV Research Collaborative (WHRC), 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. The 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.” Women from many of the research networks, like the ACTG, serve on the WHRC.

“Liz is an incredible asset to the Women's HIV Research Collaborative,” says Jessica Mooney, the Legacy Project’s Community Engagement Officer and Project Manager. “She is the primary author on a recent manuscript highlighting the need for addressing violence against women within HIV clinical and behavioral research. Her contributions and insights fuel the collaborative spirit of the working group.”

To increase enrollment of women in studies, Barr says eliminating women’s barriers to care must be explored and implemented. She lists providing extended clinic hours, child care and transportation as incentives that, if offered, could lead to greater involvement of women in clinical trials in the United States.

“If we make women a priority, we will figure out how to increase their enrollment,” Barr says. “Some people think science is science and research results can be generalized to all populations. But it comes down to basic science and our cells being different than a man’s cells. Not all results can be applied to all populations.”

Armed with her doctoral coursework in women’s and gender studies and her growing scientific knowledge base thanks to her CSS duties, Barr vows to continue fighting for increased enrollment of women in ACTG studies and the inclusion of sex comparisons in study results.

“Not coming from a science background, I catch myself sitting in on very technical study meetings and truly understanding what is being discussed,” Barr says. “We are all committed to the cause within the ACTG, but just need to arrange our set up differently to ensure the inclusion of women.”