LGBTQ Health Care Gets a Checkup

“I think about barriers to care in multiple levels: structural, interpersonal and individual,” says Beach. For example, you may not receive sex education in school that applies to you. You may lack health insurance, or your insurance company may refuse to cover the cost of gender-affirming care. Your medical chart and paperwork may not use inclusive language. Your doctor may misgender you or may lack expertise about SGM health. 

Such roadblocks reflect prevailing societal stigmas and ultimately take a toll on the well-being of SGM populations. “If you have experienced discrimination from one health provider in the past, you are less likely to want to seek care in the future,” Beach explains. All of these factors have contributed to stark health disparities. 

“There’s been tremendous progress in the social standing of the sexual and gender minority community in the last decade,” says Brian Mustanski ’99, professor of medical social sciences, psychiatry and behavioral sciences at Feinberg and director of ISGMH. “But we also have to remember that it wasn’t that long ago that people didn’t even come out because being gay or lesbian was extremely stigmatized.” 

That stigma and fear, he explains, have made it difficult not only for SGM populations to be included in health studies but also for researchers and health professionals to pursue careers focused on studying these communities. This dearth of research has contributed to the lack of high-quality health care as well. 

Mustanski set out to change that when he founded ISGMH in 2015, leveraging the partnerships he’d built with other University researchers and with LGBTQIA health organizations in Chicago. ISGMH has become a research powerhouse, conducting groundbreaking studies about the health of SGM communities and developing interventions to improve health care quality and access in Chicagoland and across the country. With 13 full-time faculty dedicated to research and implementation science, ISGMH is one of the largest university-wide research institutes in the nation focused exclusively on SGM populations and one of the top recipients of funding from the National Institutes of Health for SGM health research. Its faculty and staff serve as advisers not only to others at the University but also to federal and local agencies (such as the Centers for Disease Control and Prevention [CDC] and the Chicago Department of Public Health), community organizations (such as Center on Halsted and Howard Brown Health) and other institutions across the U.S. that seek to improve SGM health and well-being. 

“We’ve put a stake in the ground by creating a space where people can have successful careers doing this work and can be proud of research with the LGBTQ community,” says Mustanski, who has studied SGM communities for about 20 years. 

Now, in partnership with Northwestern Medicine, Lurie Children’s and many other community organizations, Northwestern faculty and staff are leading the way on SGM health research — and translating their findings into interventions that can help close the health equity gap. 

Sumanas Jordan ’17 GME, assistant professor of plastic surgery at Feinberg — and the first woman hired in her field at the University — has been performing gender-affirming surgeries at Northwestern Medicine since 2018. “I went into plastic surgery to make a big impact on people’s quality of life,” she says. 

Jordan got her start in gender-affirming care as a Feinberg resident at Lurie Children’s, a Northwestern Medicine affiliate that has had a pediatric SGM health program since 2013. 

“One of my mentors there had just started doing top surgeries on patients who were so uncomfortable with their bodies that they couldn’t shower with the lights on,” Jordan recalls with dismay. “But they were a completely different person after surgery. It was just a lovely thing to be a part of.” 

In 2018, inspired by her experience at Lurie Children’s, Jordan co-founded Northwestern Medicine’s Gender Pathways Program, a large network of clinical providers who work together to coordinate care for SGM individuals. The program helps patients by connecting them directly with endocrinologists, psychiatrists, surgeons, urologists, gynecologists and other specialists who support SGM care. 

“After I met with Dr. Jordan and the Northwestern team, I fell in love with them,” says Vyctoria Peek, who was referred to Gender Pathways after starting her transition at Lurie Children’s. Peek became one of Jordan’s first gender-affirming surgical patients. “Dr. Jordan is so passionate about her work and her patients and the trans community in general that I felt completely comfortable putting my trust in her,” Peek says. 

Piecing together a care team on one’s own, without the support of a program like Gender Pathways, can be extremely challenging. 

“Trans folks have been charged with being experts in our own care and scrapbooking together our own care system,” says Ricky Hill, a research assistant professor at Feinberg who conducts qualitative research on SGM communities at ISGMH and has served as an adviser and advocate for Gender Pathways. “It can be a nightmare,” Hill says. “It’s hard for me to navigate the managed care system, and I’m highly specialized and skilled to do this. So imagine how hard it is for the average person.” 

Gender Pathways helps alleviate that challenge. “The anxiety of walking into a doctor’s office not knowing whether or not the doctor is going to be affirming is a big deal,” Jordan says. “We give patients reassurance that we’ve talked to these doctors, and they’re going to be in good hands.” 

Jordan has witnessed the program’s effectiveness. “I definitely see it in my patients,” she says. “They are much more comfortable just being in our office. And after surgery, patients are so much happier.” 

Peek, for one, is living her best life — thanks in part to her Northwestern team. She’s studying fashion marketing and plans to participate in a six-month program at the Fashion Institute of Technology in New York City. 

Most of all, she’s grateful to just be herself. 

“I am so lucky — I have the most supportive family and friends ever,” she says. “I have an older brother who’s protective of his transgender little sister, and we’re best friends. It just warms my heart. 

“Now I’m just living my life, trying to be like every other normal college student — and having an amazing time.” 

Diana Babineau is a writer and editor in Northwestern’s Office of Global Marketing and Communications.