The structural, institutional and economic realities of HIV within the transgender community were the primary focuses of the Primary Prevention Early Intervention Committee of the Chicago Area HIV Integrated Services Council's ( CAHISC ) "Transformation Conference," Aug. 20 at the Chicago Bar Association.
The conference featured remarks by Dr. Margo Bell ( inpatient pediatric director John H. Stroger, Jr. Hospital of Cook County specializing in Adolescent & Young Adult Medicine Pediatrics ), Dr. Robert Garofalo ( division head—Adolescent Medicine, professor of Pediatrics— Northwestern University Feinberg School of Medicine, director—Center for Gender, Sexuality and HIV Prevention, Stanley Manne Children's Research Institute ), Lisa Kuhns, PhD. ( research assistant professor of Pediatrics —Adolescent Medicine, Northwestern University Feinberg School of Medicine ) and Beverly Ross ( trans woman and Youth Expert Advisory Board facilitator for AFC's Project Elevate ).
Following words of welcome and an introduction by Cynthia Tucker ( vice-president of prevention and community partnerships at the AIDS Foundation of Chicago—AFC and CAHISC's advisory board member ), Patrick Stonehouse ( director of HIV/STI prevention, Chicago Department of Public Health ) told the approximately 75 people in attendance that data is important on many levels including justifying funding and demonstrating the impact on people's lives. Stonehouse noted that until a couple of years ago there wasn't much, if any, data on the transgender and/or gender non-conforming communities because no one had asked them about their experiences.
Ross spoke about Project Elevate, which is an STI prevention-services program targeted to young Black women and transgender women of color ages 13-24. She noted that the challenges and barriers that these individuals face in terms of access to services include—but are not limited to—employment, homelessness, violence and incarceration.
Garofalo's remarks focused on "Understanding HIV Risk in Transgender Youth: Developing Interventions for a Vulnerable Population." To illustrate how youth contract HIV Garofalo spoke about a 16-year-old patient of his who, due to her economic circumstances, engaged in unsafe sex work and then became HIV positive.
He noted that there is little-to-no research or data on HIV risk among transgender young women and that transgender women have HIV rates that are higher, especially Black transgender women, than any other population in the United States.
"According to the CDC there are no theoretically-driven evidence-based HIV prevention interventions for the transgender community," said Garofalo. "We should be embarrassed by this statement since it's been 30 years since HIV was identified."
Garofalo explained that in 2004 he began the Chicago Transgender Youth Project and after collecting the data he published it in the Journal of Adolescent Health so others could see the work that he and his team did. He noted that of the people ( ranging in age from 16-25 ) he recruited for the study 18 percent had experienced homelessness, 67 percent had a history of arrest, 37 percent were incarcerated at one point, 65 percent had no access to transportation, 57 percent had trouble finding a job and 41 percent lacked access to medical care. Garofalo said that many spoke about experiencing general discrimination and health professionals denying them medical services and their limited sources of social support especially in terms of family members. Many of the study participants engaged in various forms of substance abuse and in risky sexual practices which made them especially vulnerable to contracting HIV, said Garofalo.
He also spoke about the Life Skills intervention program that he spearheaded. Life Skills, Garofalo explained, used a community-based participatory research approach with young transgender staff leading the writing of intervention alongside a multidisciplinary research team. Garofalo said that they used a holistic, theoretically driven curriculum that kept in mind the lived realities of young transgender women, not just HIV related issues.
"In my entire academic career [Life Skills] is the biggest labor of love I've ever done," said Garofalo.
Garofalo explained that the next steps should include community and structural changes so transgender people can find housing, employment and educational opportunities. He noted that mentorship programs and religious/faith-based interventions should be considered as well as the integration of biological interventions such as Pre-exposure prophylaxis ( PrEP ) and testing and treating those with HIV. The goal, Garofalo said, is to move beyond HIV and see transgender people through a broader lens.
Bell spoke about many reasons why transgender people have limited access to medical care including a lack of medical training for health professionals in the area of transgender patients, transphobia among health professionals, the lack of targeted programs for transgender people, general discrimination and many other factors.
She explained that after she started a clinic from scratch with her own money and donations she discovered that there was a segment of the transgender population who were at risk of harming themselves since they were getting their hormones off the street so she began to treat them.
"Hormones are the most important thing in a transgender person's life," said Bell.
Kuhns' remarks focused on PrEP indication and related factors for young transgender women who are HIV negative. She noted that the data was extrapolated from the study that Garofalo presented at this conference.
She explained that in general there is a high risk of HIV infection among transgender women in the United States, especially among young transgender women, and that could be prevented if there was more PrEP awareness across the board.
The purpose, said Kuhns, "was to identify correlates of PrEP indication in order to advance prevention science and practice for PrEP implementation among young transgender women in two U.S. cities, Chicago and Boston, through the Life Skills project."
"Given that there is low levels of awareness/knowledge of PrEP associated with PrEP initiation in prior studies there is a cause for concern," said Kuhns. "The study showed that PrEP interest and indication is high and that indicated an opportunity to intervene. Since there are individuals who engage in risky sexual activity it is important to intervene."
A Q&A session followed the presentations.
AFC, the Chicago Department of Public Health, Cook County Health and Hospitals System, Ann & Robert H. Lurie Children's Hospital of Chicago and CAHISC sponsored the conference.
