The Village, Alida Bouris, and her team help LGBTQ youthFinding Ways to Reach Youth at Risk for and Living with HIV.
By Charles Whitaker
VOLUME 23 | ISSUE 1 | WINTER 2016
Overcoming HIV is a collaborative effort, according to SSA Professor Alida Bouris, who is working with colleagues, alumni, and students to initiate a project on Chicago’s South Side. She is the co-director of the Chicago Center for HIV Elimination, a program housed at the University of Chicago Medical Center, to provide high quality HIV protection and clinical services for newly HIV diagnosed and at-risk adolescents and adults. The center has established the Village, a new outreach center designed to serve youth with HIV. Although the South and West Sides of Chicago have a serious epidemic of HIV infections among young gay and bisexual men and transgender women, they are areas with few agencies to assist that population. She and other faculty are also part of a newly funded research project, the Third Coast Center for Aids and Research. She finds her work provides an opportunity to combine research with practice.
Professor Alida Bouris' team had decided on yellow. A bright, sunny yellow paint that will enliven the rather clinical-looking white walls of an office in the old Deco Arts building into The Villages' new conference room.
Her team turns on music, and while some tape the edges of the baseboards, Mario Pierce, The Village's youth and young adult engagement coordinator, and Capricio Wilson, the coordinator of PrEP Chicago (a program that encourages use of a daily HIV prevention pill) and one of The Village's drop-in space coordinators, begin to roll paint onto large areas of the wall. Ricky Hill, the program director, explains, "We want this to be a gathering place for MSM (men who have sex with men) and trans people on the South Side; a place to get all kinds of information as well as support. And we want the place to enable people to feel happy, supported, and comfortable."
Hill praises Bouris' work. "Alida is someone in the social services world who actually walks the walk. She listens, she empathizes, and she builds people up—that is the kind of attitude that it takes to really combat HIV infection and resource disparities. This is hard work. A lot of the time, folks who work in social services burn out because of houw hard it can be.
"It's not always easy to try and navigate the complex systems of people's lives, especially when they intersect with powerful institutions such as healthcare and education and employment. But Alida sees the big picture, while also seeing the individual, and helps people understand where they fit into that bigger picture, which is a really amazing gift," Hill says.
The Village is an extension of the Chicago Center for HIV Elimination (CCHE), a program housed at the UChicago Medical Center to provide high quality HIV prevention and treatment clinical services for newly HIV diagnosed and at-risk adolescents and adults. Recognizing that the hospital can sometimes be an intimidating place to access and navigate, CCHE co-directors SSA professor Alida Bouris and John Schneider, M.D., launched The Village in March, 2015 as a more welcoming environment and to serve a sizable need. Schneider is an associate professor in the Departments of Medicine and Public Health Sciences at the UChicago Medicine.
The Village has become an important research location for Bouris, a leading scholar on the spread of HIV, particularly among youth of color. She has joined other scholars from SSA, UChicago Medicine, Northwestern University, the AIDS Foundation of Chicago, the Center on Halsted, and other Chicago area institutions to establish and lead the Third Coast Center for AIDS Research (TC CFAR), newly funded with a five-year $6.5 million grant from the National Institute of Allergy and Infectious Diseases (NIAID ) of the National Institutes of Health. (Read the story in the Winter 2016 issue of SSA Magazine.)
The initiative will have a special focus on stopping the spread of HIV among young men who have sex with men and transgender women, two groups who bear the highest global burden of new HIV infections.
Bouris has published extensively on the topic of adolescents and HIV. Her work has also looked at prevention strategies and the role of family and social support for younger black men who have sex with men who are at risk for or living with HIV/AIDS.
While the South and West Sides of Chicago have a serious epidemic of HIV infections among young gay and bisexual men and transgender women, they are areas with few agencies to assist that population. "There are a smaller number of LGBTQ serving agencies on the South Side of the city," says Bouris. "As a result, many of the youth we serve have to travel one to two hours to the North Side in order to access care."
And while CCHE and UChicago Medicine meet many of the biomedical needs of the population, The Village is designed to address the social and contextual factors, which Bouris and her team say are particularly important.
Located at 55th Street and Lake Park Avenue in Chicago's Hyde Park neighborhood, The Village was established as an independent non-profit agency. The directors and staff are developing programming, which will include a variety of research projects and programs, such as PrEP Chicago, a social media project designed to raise awareness about Pre-Exposure Prophylaxis (PrEP), a daily HIV-prevention pill that is one of the most effective weapons in the fight to eradicate HIV. The Village will also provide drop-in services to LGBTQ youth, support groups, resource and behavioral health counseling, and community programs such as criminal record expungement and legal aid clinics for people involved in sex work. In addition, The Village is partnering with other community-based organizations that represent or serve the African American LGBTQ community.
"We recognize that we don’t have expertise in every area," Bouris says. "And in this funding climate, it's not necessarily feasible for other organizations to open a brick-and-mortar agency on the South Side. Consequently, we’re developing partnerships with other agencies to deliver programming in The Village so that we don’t duplicate services. In addition, one of the things I'm most excited about is the role of SSA alumni and interns in CCHE and The Village. Our team includes Rebecca Eavou, LCSW, AM '11; Katie Berringer, AM '14; and Carlos Robles, AM '16 candidate, as well as two SSA interns, Nora Feely and Alexis Cuozzo. I am fortunate to work with such a dedicated team of social workers and their careful training and thinking is critical to supporting the work we are doing."
"Alida has been a great mentor and source of support for us in that work. She meets regularly with us to talk through all of the steps involved in building that programming—writing policies and procedures and developing protocols, developing assessment tools, developing training tools for the interns and other staff. She has been really instrumental in helping us with that process and thinking through each step of that process," says Berringer.
Robles adds, "Alida is a true advocate for clients and it drives everything she does as a professional. This stems from her compassion for others and focus on social justice. She is an inspiration for me to strive to go the extra mile when serving others."
The Village also will serve as a space where research meets practice. "People sometimes call it implementation science," says Schneider. "It is research that is within the community and is having a direct impact there."
Nine black men between the ages of 25 and 35 assembled on a Wednesday at The Village. They came to participate in a twice-monthly rap session that is partly about food and fellowship. The gathering also helps scholars better understand community perspectives on HIV prevention and other supportive programs, services, and interventions.
Their initial chatter is casual and random until Mario Pierce, the workshop facilitator, enters the room to launch the evening's conversation. The main topic is a survey designed to gauge the group's feelings about an injectable form of PrEP, the daily HIV-prevention pill. The prospect of an injection that might eliminate the need for a daily pill is greeted with both skepticism and excitement. While some welcome the convenience, there is also talk that the development might be a nefarious plot on the order of the infamous Tuskegee experiment conducted between 1932 and 1970, in which black men stricken with syphilis were left untreated in order to study the progress of the disease. "How do we know this isn’t just like Tuskegee?" a young man asks.
The comments will wind up informing how Schneider, Bouris, and their team proceed in an effort to join a large scale study that will compare the efficacy of injectable PrEP to oral PrEP. But more importantly, Bouris says, is that the comments tie research to practice in a very tangible way.
"One of the things that has been really important for me in my development as a scholar is to have my research closely connected to practice and to be really thoughtful about building strong community relationships," she says. "My identities as a social worker and scholar are closely connected, and I want to stay connected to practice. That way, we can see things on the ground as they are happening. I, John, and our team are able to have conversations with young people, and partners, and that directly affects how we see and think about conducting our individual and collective research projects and service programs."
Bouris, who joined the SSA faculty in 2009, developed her interest in connecting research with practice as a master's degree candidate in Columbia University's School of Social Work, where she was inspired to pursue a PhD.
She was as a research assistant for her adviser and mentor, Vincent Guilamo-Ramos, now a professor of social work and global public health at the Silver School of Social Work at New York University. During her undergraduate years as a woman's studies major at the University of California, Berkeley, she also served as a peer health counselor providing individual and group counseling on sexual and reproductive health. After graduation, she did volunteer work at community-based organizations involved in women's health, LGBTQ health, and harm reduction in the San Francisco Bay Area and in Boston, MA.
Toward the end of her time as a graduate student, she was part of a project with researchers from Centers for Disease Control and Prevention called "The Parenting Synthesis Project." It was an interdisciplinary team of scholars who reviewed and identified specific areas of research that were understudied with respect to how parents influenced adolescents and adolescent health. Bouris lead the team's review of the literature on parental influences on LGBTQ youth.
"When we look at the data on adolescent health, we see that youth who report same-sex attractions, same-sex behaviors, or who identify as LGBTQ tend to fare worse off on health indicators, often due to the unique stressors to which they are exposed," Bouris says. "And health and mental health indicators can be even more complex when we overlay experiences with racism, discrimination, and oppression experienced by youth of color. However, much of our research on adolescent health, especially with respect to parental influences, is focused on heterosexual youth, and LGBTQ youth of color, in particular, are understudied."
That disparity is particularly startling given that young African American MSM and transwomen are the groups that are most disproportionately impacted by HIV. According the Centers for Disease Control, the rate of new HIV infections in African Americans is eight times that of whites based on population size, with young gay and bisexual men aged 13 to 24 being the most affected of this group. A CDC study in 2010 in 10 cities reported 4,800 new HIV infections among African American males aged 13 to 24, nearly twice as many as for white and Latino men in that age group.
Racial disparities in the incidence of HIV have existed since the earliest stages of the epidemic, yet those disparities have become more pronounced over time. Interestingly, scholarly literature suggests that this phenomenon is not driven by individual risk behaviors: on average, young, black men who have sex with men have fewer partners, and they are more likely to use condoms than are their white peers.
However, Bouris says these young men tend to be embedded in social and sexual networks where there is a high prevalence of HIV, low rates of viral suppression among people living with HIV, less use of biomedical interventions such as PrEP, and a higher burden of poverty, incarceration, low education, and unemployment, four major social drivers of HIV among black MSM in the United States. Additional factors related to stigma and discrimination make for a combustible scenario that drives health disparities.
"So if you're in a network where there’s lots of HIV but there might not be a lot of HIV testing or access to HIV prevention and treatment services," Bouris says, "you're just much more likely to come into contact with it."
Bouris and the entire CCHE and Village team are trying to address many of these issues in their research and practice. Bouris is especially interested in better understanding how parents and families—even those who struggle with accepting their child's sexual orientation and/or gender identity—can play a role in stemming HIV/AIDS.
"My research is examining how we can bring parents in to our efforts to improve the health and well-being of LGBTQ youth, especially our efforts to prevent and treat HIV/AIDS among young gay and bisexual men and transwomen," she says. "There are opportunities to involve parents in this work but we still need to determine what that involvement should look like. Right now, we have a small but growing body of research but are expanding this via our research and practice.
"What I discovered doing this hybrid of research and practice," Bouris says, "is that I really like the idea of applied research that combines the role that social workers play, both in creating services and delivering services, with the role that researchers play in developing and evaluating those services."
As co-director of CCHE, she has been engaged in a number of studies and projects that attempt to close the feedback loop between research about effective methods of preventing HIV in gay and bisexual African American males in underserved Chicago communities and the actual delivery of services to that population.
"Alida has really helped shape the conceptual model for CCHE," says Schneider. "Her social work training and her attention to detail are what have helped us develop the intervention components of what we do."
In a similarly collaborative fashion, Bouris is co-principal investigator of SSA's STI and HIV Intervention Network (SHINE), an interdisciplinary project that brings together a team of over a dozen scholars from a variety of fields to develop new integrated approaches to HIV prevention.
"The field [of HIV prevention] is very biomedically oriented," Bouris says. "Social work can play a vitally important role in understanding the link between macro policy environments and how that trickles down to the individual level, and how people function in social environments and how social environments offer unequal opportunities for risk and protection."
One of the people who appreciates her perspective is Matt Richards, AM '11, who is director of programs for Care2Prevent, a pediatric and adolescent HIV program at UChicago Medicine.
"We have a lot of social workers, obviously, that work at Care2Prevent, and a lot of social workers that work at CCHE, and she really has been a mentor to a lot of us. In particular, really supporting how do you incorporate assessment and quality evaluation into your programs," he said.
Rebecca Eavou, AM '11, the Program Manager at CCHE, also praised Bouris’s mentoring. "I appreciate Alida's dedication to making CCHE and The Village a place where staff want to work. She’s been instrumental in the planning of a staff training series, which aims to help all of us to come together as a team and build a shared language for the work we do. With Alida's help I'm hopeful we’ll be able to build out social services at The Village."