An Advocate for Women with HIV

Jan 01, 1970

Susan Cohn, MD, MPH, still remembers the stigma surrounding an HIV diagnosis in the early days of the epidemic.

“I was living in North Carolina and you would hear stories that people hospitalized in Wilmington who had tested positive had a special star affixed to their door,” Cohn says. “People wanted to get into care, but did not want their immediate community to know. So I had patients driving from three hours away to come to the clinic I worked at in Chapel Hill at the University of North Carolina (UNC).”

Cohn is currently an investigator at the AIDS Clinical Trials Group (ACTG) Network’s Northwestern University Clinical Research Site in Chicago. Her professional interest was originally treating cancer patients. Then her residency took her to an immunodeficiency clinic.

“I was interested in caring for people who were quite sick and needed a strong doctor-patient relationship,” Cohn says. “When I started treating young people living with HIV, I knew I wanted to support them as they went through this.”

Cohn was the first AIDS fellow at what was then Boston City Hospital. In 1988, she accepted the position at UNC’s clinic. That is also when she began her research career with ACTG at the Network’s UNC site. She stayed at UNC until 1992 when she moved to the University of Rochester in New York, also an ACTG site. In 2010, she moved to Chicago and took a job at Northwestern. Northwestern is part of a group of several sites that make up the ACTG’s Chicago Clinical Trials Unit (CTU). It was there that she met Kim Scarsi, a research pharmacist within the Chicago CTU.

“Susan has dedicated her career to advocating for and advancing the science to support issues facing women infected with HIV, ranging from contraception and pregnancy, to gender specific antiretroviral treatment considerations,” says Scarsi. “Importantly, she also advocates for all underrepresented populations, working to find solutions for engaging this critical population in HIV care, clinical trials, and minimizing antiretroviral adherence barriers.  She does this all tirelessly, with a smile on her face, and with complete support and encouragement for new investigators and new ideas.” 

The populations most affected by HIV in Chicago are men who have sex with men, especially African American men, as well as women. In fact, 25 percent of her patients are women. Treating the infection in women is a focus of Cohn’s research and she is the Co-Chair of the Women’s Health Inter-Network Scientific Committee (WHISC). The WHISC is a joint effort of the ACTG’s researchers and the International Maternal Pediatric Adolescent AIDS Clinical Trials Group (IMPAACT). The committee develops optimal strategies for the prevention and treatment of HIV disease and related complications that are unique to women.

“In the United States, 25-35 percent of people living with HIV are women, but our domestic study enrollment does not reflect this,” Cohn says. “We need to work hard to enroll enough women in our trials so that the results may be reflective of their participation and the results can be effective for them, too.”

Cohn says there are many reasons why women shy away from research studies. Some obstacles including busy schedules, childcare issues, a tendency to put the needs of the family first and a lack of education make it tough for them to appreciate the importance of research and the relevance of research to them.

“I think if we minimized the number of study visits and focused on studies that women can relate to such as contraception research, then we would get women to enroll,” Cohn says.

Cindy Firnhaber, MD, MS, is an investigator at the ACTG’s University of Witwatersand site in Johannesburg, South Africa. She serves as Vice-Chair of the WHISC with Cohn.

“Susan has been a pure joy to work with on the WHISC,” says Firnhaber. “She has been instrumental in strengthening the scientific productive of the WHISC in the past years and has navigated the current murky waters of decreased funding support for this agenda with expertise. Her passion, experience and knowledge has kept the women’s scientific agenda on the playing field.”

Research into a cure for HIV has been highlighted in the news recently, especially after the relapse of the baby in Mississippi thought to have been cured of HIV after being given a high dose of anti-HIV medications after birth. While Cohn thinks cure research is important, she believes ensuring everyone living with HIV is connected to care and adhering to treatment should be a research goal as well.

“Many people went into this field to help manage this disease and help people living with HIV live normal lives,” Cohn says. “It seems the main focus of research now is a cure and that is concerning because only 28 percent of people living with HIV in the United States have a fully suppressed viral load and only 50 percent are in regular care. We have to focus on those people who are not doing well and do more to get them into care.”

The number of new HIV infections each year in the US is between 50,000 and 60,000. Cohn would like to see this troubling statistic investigated including the role depression, substance use and socioeconomic factors may play in contracting HIV and in preventing optimal control of HIV. Knowing research dollars are tight, Cohn says partnering more frequently with other funding sources such as the National Institute of Mental Health and the National Institute on Drug Abuse would be beneficial.

When she is not conducting research at the Northwestern ACTG site, Cohn likes to play tennis, garden and travel. She also recently began swing dancing.