Sharon Maxwell Tackles Stigma

Sharon Maxwell has made fighting the stigma associated with having HIV in rural America her mission. As Co-Chair of the AIDS Clinical Trials Group’s Global Community Advisory Board (ACTG GCAB) and living with HIV since 1994, Maxwell has firsthand knowledge of the disease and the scientific studies being conducted in the ACTG’s labs around the world.

“I was at the post office in the small town in Illinois (USA) where I live and I was taking out some paperwork from my box that had the HIV/AIDS red ribbon on it,” she says. “One of my neighbors said, ‘Sharon, why do you have that information? HIV only infects gay people and there aren’t any gay people here.’ I thought for a moment and I realized I knew quite a few gay people in our county. And here I was married to a man and living with HIV. I realized then how much education was needed in rural America.”

When Maxwell’s husband was diagnosed in the mid-1990s, she got tested and learned she too was living with HIV. She immediately began looking for a support group that included other women and found locating her peers was not easy.

“I was a married woman,” Maxwell says. “There were a lot of men to talk to, but finding women was important to me because it affects us differently. I wanted to talk to other women about side effects of the medications that were available at the time.”

Maxwell’s search led her to the ACTG’s site at Washington University in St. Louis, Missouri, about 50 miles west of where she lived in Illinois. There, she found answers to her questions from people who were infected and affected by HIV. One of the women she met who was affected by HIV was advocate Allegra Cermak, the ACTG’s Community Coordinator. The two continue to work together to this day with the ACTG and have become great friends.

“Sharon joined the Washington University Community Advisory Board (CAB) in the mid 90's,” Cermak says. “We shared a background in art and Sharon was clearly someone who tackled work with energy. We were shortly serving together on the CCG (Community Contingency Group, now called the Community Scientific Subcommittee or CSS). Sharon added a great deal to the group – as a woman, as someone living in a small town and as someone with professional experience in her field.  She soon was taking a leadership role as member of the AEC (ACTG Executive Committee) on the Site Evaluation Committee. It's been a long, happy and productive friendship.”

CAB members at each of the ACTG’s sites can choose to apply for one of 28 positions on the CSS. Representatives to the CSS serve four-year terms and sit on protocol teams, advising the ACTG’s researchers and site staff about studies from the community’s perspective.

Maxwell applied in 1996. Not only was she accepted, she was elected to serve as the CSS rep on the AEC, Performance Evaluation Committee (PEC) and Women’s Health Committee. The AEC oversees the scientific direction and research agendas of the ACTG and is responsible for oversight of all clinical trials activities and timely analysis and dissemination of study results. The PEC evaluates the progress of each of the ACTG’s 75 research sites from the mix of protocols being conducted at each location to how funding is being allocated.

But perhaps her most fitting committee membership occurred when she became the CSS rep to the Women’s Health Committee. After starting her own quest to find women she could relate to several years earlier, Maxwell joined one other female CSS rep on the committee, providing feedback from the community’s perspective about the two studies the ACTG had at the time for women.

“One protocol was about HIV and pregnancy and the other was about HIV and genital secretions,” Maxwell says. “The other female CSS rep and I had no plans to become pregnant and I remember her saying, ‘I’m more than genital secretions.’ Neither of these studies applied to us and we wanted other studies about women and HIV to be researched as well. We were concerned about the long-term effects of the antiretroviral (ARV) drugs. We wanted to know about HIV and menopause. ACTG leadership asked for our feedback and listened, which was very important.”

Because they spoke up, the number of studies enrolling women jumped from two to 11 by the end of Maxwell’s term. She and Cermak, along with newer CSS rep Liz Barr, continue to advocate today for research about how women are uniquely impacted by HIV as many studies focus on the male population. It is also much harder to recruit women in the United States into clinical trials than it is internationally.

“Allegra, Liz and I are all members of the Women’s HIV Research Collaborative (WHRC),” Maxwell says. “I am the Co-Chair along with Annet Davis-Vogel from the University of Pennsylvania. The coalition meets annually and includes women from the ACTG as well as other HIV research networks including IMPAACT (International Maternal Pediatrics Adolescent AIDS Clinical Trials group) and MTN (Microbicide Trials Network).”

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.”

“Sharon Maxwell, WHRC Co-Chair, brings a wealth of knowledge and experience in terms of raising critical issues around the impact of HIV on women in the US,” says Jessica Mooney, Community Engagement Officer and Project Manager for the Legacy Project. “She has been an integral presence on our leadership committee for highlighting urgent priorities in prevention and therapeutic research.”

Maxwell says HIV and aging as well as violence against women who reveal their status, especially overseas, are two timely topics she would like to see further researched. She also hopes to see the concept of designing studies with women’s accrual in mind written into all ACTG protocols.

In addition to her committee duties as CSS rep back in the late 1990s, Maxwell also sat on three to four protocols as the CSS rep, including a study to treat cytomegalovirus (CMV). CMV retinitis is a condition that can lead to blindness and was a condition she had at the time.

“When I was living with CMV in the 1990s and realized the researchers really cared about me and didn’t think I was some lowly person in the community with HIV, that’s when I really began to love my work with the ACTG,” Maxwell says. “It is one of my most memorable moments. They really wanted me to be there so they could understand what people living with HIV were going through. It was really inspiring and I remember thinking, ‘I’m going to be a part of every study I can.’ I really liked being able to give my feedback.”

Once her term on the CSS was done, Maxwell continued to work at the CAB-level and then she decided to try for a position on the newly formed Global Community Advisory Board or GCAB in 2009. Every ACTG site has a CAB and each CAB elects one person to serve on the GCAB. The CSS is an autonomous subcommittee of the GCAB, but someone could be a member of their CAB, their CAB’s rep to the GCAB and a CSS rep. Four years after the GCAB was created, Maxwell is serving the last year of her second term as GCAB Co-Chair.

“Because it was a new organization, I wanted to be a part of it and find a way to make the community’s voice heard in a cohesive way that would be acknowledged by leadership,” Maxwell says. “The ACTG’s leadership has always been and continues to be so accepting of community ideas.”

Eric Lawrence, CSS Co-Chair, met Maxwell at a Living with HIV retreat near St. Louis shortly after he moved to the area after being diagnosed in the mid 1990s in LA. He credits Maxwell for giving him the motivation he needed to redefine his life.

“Sharon is the most skilled and compassionate advocate for people living with HIV,” Lawrence says. “She is a tremendous role model, yet very modest. She has an amazingly strong voice and has been a wonderful mentor.”

Since she has been a part of the ACTG for nearly 20 years, Maxwell smiles when she reflects on the Network’s many successes. “I think the ACTG’s research into aging and co-infections such as tuberculosis (TB) and hepatitis C virus (HCV) have been several of our successes,” she says. “I also like seeing the new people come up in the ranks like Liz and Aaron Laxton, who is a new CSS member at my site in St. Louis. The epidemic is different for them than it was for us in the older generation when we began advocating in the 1980s and 1990s. To see them find interest in our group is amazing.”

And just as she did years ago, Maxwell still keeps the fight against stigma in small town America on her radar. Along with Lawrence, she is a member of AIDS Foundation of Chicago and the Illinois Alliance of Sound AIDS Policy (ASAP). She visits local representatives and senators’ offices to let them know how important HIV funding is to their local constituents. She also works with the Illinois Department of Health and the Ryan White Care Act lead agency in her area as a client representative.

“Stigma in rural America is horrible. Many people in my county have tested positive, but only a handful of them are in care. They do not want to get their care here or fill their prescriptions at the local pharmacy because then their family and neighbors will know. So they choose to travel hours west to St. Louis or hours south to Vanderbilt in Tennessee,” Maxwell says. “I am worried about the sequestration and how that will impact research. I hope the ACTG can continue its research and possibly explore collaborating with other networks and organizations like the Ryan White Care Act to help transport folks in rural areas to research sites. Stigma in rural America will continue to be my personal fight. I take our local clients to lunch and some days we even go antiquing. But I make sure they get to a support group and come lobbying with me as well.”