When Robert Garofalo, MD, MPH, first started working with transgender youth in the mid-1990’s, he questioned whether or not it was ethical to initiate hormone therapy in those who were under the age of 18. Upon meeting 15-year-old Ebony, however, his questioning shifted to how ethical it was not to do so.
Ebony had been living as a girl since the age of seven. She dressed in girls’ clothing and went to school every day as a girl. Her parents, supportive and genuinely concerned with the well-being of their child, got her into therapy when she first began to challenge the gender orientation she’d been assigned at birth. It was the therapist who approached Garofalo about starting Ebony on hormones.
There was one major problem, though. Even though he was a graduate of the New York University School of Medicine, Garofalo had no training or experience with prescribing hormones for the purpose of changing a person’s gender, especially someone as young as Ebony.
He admits that he was extremely reluctant at first, but the encounter with Ebony opened up his heart and his mind.
“We know that gender identity is something that is formed during childhood,” he explains. “So, for eight years Ebony had been living as a girl and saw herself as a girl. It was pretty obvious that this wasn’t just a fad or a phase that she was going through, nothing was going to change. So was it really ethical to delay starting hormones until she turned 18? I mean, what is so magical about the age of 18?”
Garofalo currently serves as the Director of Adolescent Medicine at Howard Brown Health Center (HBHC) in Chicago. The guidelines for initiating hormone therapy in transgender youth at HBHC recommend holding off until the individual is at least 18 years of age. He suggests, though, that this has more to do with the laws around parental consent than anything else.
“I don’t have an absolute lower age limit,” he says. “I take each case on an individual basis.”
In addition to having the parents of a young transgender person involved, which is often times a challenge in and of itself, Garofalo feels that such decisions should be made in collaboration with a therapist and even a case manager if possible.
Most transgender youth, he says, would prefer that he give them a checklist of requirements or things that they will need to do in order to get him to prescribe hormones for them. He contends, however, that it’s simply not that easy.
“There are lots of factors that go into the ultimate decision,” he says. “Depending on the youth, I may want them to see a therapist for six months or maybe just two or three sessions or maybe two years. Not that there is anything wrong with them, but to make sure that there is nothing else going on with regards to their lives or their experiences that is in any way unstable, so that we can try to stabilize that before transition is started. And also to make sure that they have some realistic expectations about what a transition is going to be like.”
The part about expectations, he believes, may be the most important piece of therapy. It is critical for transgender persons seeking to begin hormone therapy to understand it as a process—starting on hormones tomorrow will not result in a fully-developed person of the opposite gender in three weeks.
Also in the back of his mind is the fact that information regarding the biologic effects of giving someone hormones before they’ve actually gone through puberty are relatively unknown. Things such as bone density or bone development haven’t been well studied in transgender youth who begin hormone therapy at an early age. And, while it is believed that there are only mild interactions between antiretroviral therapy and hormones prescribed for gender reassignment, the potential for long-term side effects as a result of combining the two is not very well understood at all.
In fact, knowledge about this “overlooked and misunderstood” community in general is very limited. And Garofalo’s concern for these young people runs much deeper than determining the appropriate time to begin hormone therapy in them or even HIV prevention and care, for that matter. The needs of young transgender people, he suggests, are far more extensive than many people realize.
“I feel that a lot of places are interested in serving transgender youth, but only when they become HIV-positive, because that’s where all the funding is,” he explains. “But this community has primary care and prevention needs certainly long before they could have put themselves at risk of becoming HIV-positive. I don’t think they’re being well served when we only see them through an HIV prism.”
|“A lot of places are interested in serving transgender youth,
but only when they become
HIV-positive, because that’s where all the funding is.”
Realistically speaking, the odds that a young transgender person could prioritize HIV prevention and treatment among the exhaustive list of other issues and concerns facing them—including, but not limited to, finding gainful employment, establishing healthy social support networks, negotiating relationships with family and friends, and the stigma associated with simply being a transgender person—are slim to none.
“Yes, HIV is a part of this puzzle, but we really need to see them as whole individuals. And that extends far beyond their identification as HIV-positive individuals or people at risk for HIV,” said Garofalo.
The problem, though, is that culturally competent services for transgender youth, especially for anything not relating to HIV, are extremely rare. This is largely due to the fact that the limited amount of resources available for services to this population comes by way of money allocated for HIV-specific services. And, until recently, even that money was lumped into the same chunk of resources that were allocated for services geared towards men who have sex with men (MSM).
As a gay man, Garofalo can completely relate to the challenges that young transgender people face with accessing respectful services and culturally competent health care. He is keenly aware, though, of the fact that being transgender is a totally different construct from being gay.
“When I was a young person, if I wasn’t ready to be out about my identity because I didn’t think that my family could handle it or financially I didn’t think I could be on my own or for whatever reason, if I wanted to hide my sexuality or my identity, I could do that,” he says. “And we could argue whether that’s healthy for me or not in the long run, but at least the option was mine. For transgender people, on the other hand, who feel like they are trapped inside the wrong body, they don’t really have that choice.”
“The transgender youth community is really one that has challenged me as a clinician, and as an academic, in ways that are much more gratifying and, at times, frustrating than any other population of youth that I’ve worked with,” he says. “Because the challenges and the stigma that they face are exponentially more difficult in some ways than even those which gay men face.”
That said, Garofalo is committed to ensuring that transgender youth have access to the services they need in order to live productive, healthy lives.
“Health care is a human right,” he says. “And everyone deserves access to quality healthcare and to services.”