According to co-director of Lurie Children's Hospital's Gender and Sex Development Program Rob Garofalo MD/MPH, the Midwest initiative offering a wide range of services for transgender and gender nonconforming youth began in 2013 with about a dozen patients.
"Last week we saw out 400th patient," he told Windy City Times. "We see about 15 new patients a month and we have a four-to-five month waiting list.
On June 23, the program announced that it had received a matching grant of $500,000 from transgender philanthropist and advocate Col. Jennifer Pritzker. The award challenges Garofalo and his team to raise $500,000 from the community which will then be doubled by Pritzker's donation.
It was Pritzker and her Tawani Foundation who was instrumental in providing seed money for yhe Gender and Sex Development Program three years ago.
"That was also a matching gift," Garofalo told Windy City Times. "At that point Lurie, did not go to the community to meet the match because they wanted to demonstrate their commitment to the program so it was done internally."
In a 2014 interview with Windy City Times, Garofalo described himself as a "dog with a bone" when it came to the idea of establishing the clinic—something that began to take shape as he was working with adolescent transgender women who were either exposed to or at risk of acquiring HIV.
He read a 2011 paper authored by Dr. Norman P. Spack, the co-director of the Disorders of Sexual Development and Gender Management Service (GeMS) clinic in Boston.
Garofalo sent the paper to Pritzker and convinced her that Chicago was in need of a clinic of its own. "This meant something to me," he said. "I was going to make this happen by hook or by crook."
With the seed money in place, Garofalo and his team were able form what he describes is the most comprehensive gender and sex development program in the United States.
"Every discipline is represented in a really comprehensive model," he said. "We have endocrinology, pediatrics, adolescent medicine, medical ethics, psychologists and psychiatrists. We even have surgeons at Lurie who are beginning to do some work in this area."
Yet Garofalo admitted that, when it launched, he had no idea that the demand for the services the program provides would be so tremendous.
"I never could have imagined how much of a need there was out there to have this kind of program," he said. "It takes me back to my early days of HIV work in the '80s. We are filling a need that, at least three years ago, no one else was doing."
"Honestly, more than any other grant I have ever received in my life, I feel like we hit the ball out of the park," he added. "So, at the end of the three-year period, we went back to Col. Pritzker and told her 'you helped us develop a center of excellence. Please help us take it to the next level'."
Pritzker agreed with one quid pro quo.
"She had enough confidence in us to agree," Garofalo said. "But she didn't want to involve just Lurie and Tawani. She wanted to garner support from the broader community because this is a population needing that support."
Garofalo described the award as "three-pronged."
"It allows us to provide clinical care and wrap-around services for uninsured and underinsured children and adolescents," he said. "It's not unusual for these services or medications not to be covered. The award allows us a great deal of flexibility to make sure that people don't fall through the cracks."
The second part of the award is designed to enhance the program's academic approach as a center of excellence.
"Because Jennifer [Pritzker] gave us the opportunity in 2013, we were extremely well-positioned to be part of the first National Institutes of Health (NIH) funded grant looking at long-term medical outcomes of the interventions on these children through the use of pubertal-blockers and cross-sex hormones," Garofalo said. "Because of Jennifer's generosity and foresight we were able to apply with Lurie, The Children's Hospital of Los Angeles, the University of California San Francisco and Boston Children's Hospital."
