Gender care for minors requires teamwork, centers on family
In a little more than a decade, access to gender-affirming care for minors has increased greatly across the U.S.
In 2007, Boston Children’s launched its Gender Multispecialty Service, the first major program in the country for gender care for adolescents. Today, there are at least 80 institutions with such a program, according to the nonprofit Transgender Legal Defense and Education Fund. Gender-affirming care for adolescents has also been addressed in the World Professional Association for Transgender Health (WPATH) Standards of Care for the Health of Transsexual, Transgender and Gender-Nonconforming People published in 2012 and the Endocrine Society’s Endocrine Treatment of Gender-Dysphoric/Gender-Incongruent Persons published in 2017.
“We’re still in the early years,” Janet Y. Lee, MD, MPH, MAS, assistant adjunct professor of pediatrics and medicine in the divisions of pediatric endocrinology and endocrinology and metabolism at the University of California, San Francisco (UCSF), told Endocrine Today. “There have been some growing pains, but I think gender-affirming care for youths will become standard of care just as it has been in the Netherlands for decades.”
Multiple studies have shown gender care for children is associated with better mental health outcomes and quality of life. In a study of more than 20,000 transgender adults published last year in Pediatrics, those who had pubertal suppression in childhood were less likely to report suicidal ideation compared with transgender adults who wanted pubertal suppression but did not receive it (OR = 0.3; 95% CI, 0.2-0.6; P = .001). In a second study published in Pediatrics, 148 transgender adolescents receiving either pubertal suppression or gender-affirming hormone therapy at a multidisciplinary health center in Dallas reported large improvements in body satisfaction, small to moderate improvements in depressive symptoms and small improvements in total anxiety symptoms after receiving gender-affirming care compared with their initial clinic visit.
“What we know so far is that people who receive gender-affirming care during childhood have better outcomes as adults,” Vin Tangpricha, MD, PhD, professor of medicine in the division of endocrinology, metabolism and lipids at Emory University School of Medicine, told Endocrine Today. “We believe it’s safe and effective.”
Still, plenty of obstacles remain for minors seeking gender care. Access can be spotty in some regions, especially for those who do not live near a large city. Access is further hampered by a shortage of pediatric endocrinologists who have received the training necessary to offer gender care for minors.
Another issue has been the interference of politics. Laws prohibiting gender care for children, such as one recently passed in Arkansas, could reduce access and cause harm, according to providers.
“Blocking gender-affirming care to minors invalidates these children’s existence and that’s incredibly harmful to any human,” Caroline Davidge-Pitts, MB, BCh, an endocrinologist specializing in transgender health at the Mayo Clinic in Rochester, Minnesota, told Endocrine Today. “I worry about what the downstream effects on these individuals would be, especially when it comes to suicide and self-harm. Those would be my biggest concerns.”
Using a multidisciplinary approach
Gender care for minors involves a multidisciplinary approach, typically involving an endocrinologist or pediatrician and a mental health provider, social worker and other specialists to best serve the child’s needs. When a minor expresses a desire to seek gender care, providers will first schedule a meeting with the child, parents and a mental health professional to craft a personalized plan.
“Whenever I’m about to see a child, I do a telephone visit with the parents first so I can understand their concerns and questions, and their hopes of what they’re looking for,” Ariel S. Frey- Vogel, MD, MAT, assistant professor of pediatrics at Harvard Medical School and director of child and adolescent services within the transgender health program at Massachusetts General Hospital, told Endocrine Today. “Then when we go into the appointment, it will be with the parents and the child. I will typically meet with everyone together for a few minutes, and a social worker is there too. Then I’ll meet with the child alone. The social worker and I will talk to the child and try to get a sense of: Where are you coming from? What’s going on for you? What are your stresses? What are the things you’re hoping for? It’s to really get an understanding of how a child understands their gender identity.”
Both Endocrine Society and WPATH guidelines emphasize the importance of mental health in gender care for minors. According to the Endocrine Society guideline, mental health professionals should have training in child developmental psychology; the ability to make a distinction between gender dysphoria and similar conditions, such as body dysmorphic disorder; an ability to psychosocially assess a person’s understanding and social condition that could affect gender-affirming HT; and knowledge of the criteria a minor must meet for pubertal blockade or gender-affirming HT.
“We require a letter of support from a therapist before pubertal blockers, and then we require another letter before sex hormones are started,” Lee said. “It’s to ensure ongoing care has happened and more evaluations have continued, and the youths have explored their gender identity, because there are different medical implications to consider at each step of the process.”
At many practices, youths can receive gender care only with the consent of both parents. This can sometimes lead to a difficult situation where one or both parents are unsure whether the child should undergo treatment.
“You have to find a common ground,” Maja Marinkovic, MD, associate clinical professor in the department of pediatric endocrinology at the University of California, San Diego, and medical co-director of the Center for Gender Affirming Care at Rady Children’s Hospital-San Diego, told Endocrine Today. “It is not rare that parents and guardians are worried or scared. I validate their feelings, listen to them, hear their voices and their concerns, and try to address those with research data and my personal experience. Parents and guardians are crucial, key players of the treatment team. Irreversible treatment cannot be given without parental consent, and both parents have to be on board and agree with it. It sometimes takes time, multiple visits and even visits with parents alone.”
Prescribing pubertal blockers, HT
The WPATH guideline addresses three types of physical interventions to affirm gender in minors. First, pubertal blockade with gonadotropin-releasing hormone analogues, which suppress estrogen or testosterone production to delay the physical changes of puberty, allows youths more time to explore their gender identity.
Pubertal blockers may be appropriate for an adolescent who demonstrates a long-lasting and intense pattern of gender dysphoria that has emerged or worsened during puberty. Any coexisting psychological, medical or social problems must be addressed before starting puberty suppression, and informed consent must be given by both the adolescent and parents.
These hormones cannot be prescribed before puberty; according to the Endocrine Society guideline, adolescents must first reach Tanner stage 2. Pubertal blockers are reversible and can be prescribed for a few years before a child and their parents decide whether to pursue gender-affirming HT.
“If the child is prepubertal, there’s no role for hormonal intervention at that time,” Davidge-Pitts said. “It’s really about supporting that child as needed, whether it be helping with social transition [or] exploring their gender identity. When the child reaches puberty, that’s when the discussion can be had between the child, the child’s parents, the health care providers, and making a decision together as a team as to whether puberty blockers are the next step.”
A decision to pursue gender-affirming HT typically must be made after 2 to 3 years of pubertal blockers, according to Frey-Vogel, when bone formation can be affected without testosterone or estrogen, increasing risk for osteoporosis.
“This doesn’t happen in the first 2 to 3 years of using the pubertal blockade, and the bones catch up and regain their strength once those hormones are reintroduced,” Frey-Vogel said. “If people want to continue pubertal blockade beyond 2 to 3 years, we have to more carefully assess bone density and ensure the bones are remaining healthy and strong.”
Gender-affirming HT, the second intervention, is partially reversible and can be initiated for an adolescent with persistent gender dysphoria and sufficient mental capacity to give informed consent, according to the Endocrine Society guideline. Gender-affirming HT prescribed to youths differs from adult HT in that it accounts for somatic, emotional and mental development, according to the WPATH guideline.
The timing of femininizing or masculinizing HT in adolescence has changed in recent years. In the past, providers followed a protocol developed in the Netherlands, which did not initiate HT until age 16 years, the age of consent in that country. More recently, the Endocrine Society guideline recognizes compelling reasons to start HT before age 16 years, but cautions that few studies have examined gender-affirming HT before age 13.5 to 14 years.
One topic children and parents must discuss before starting gender-affirming HT surrounds fertility. To preserve fertility, a child must stop pubertal blockers for enough time to experience full natal puberty before starting gender-affirming HT, Frey-Vogel said.
“Most transgender kids are going to say, ‘Fertility is the last thing on my mind. I need to be able to live as my authentic self and have my body match my gender identity,’” Frey-Vogel said. “But parents may have different concerns, so it’s usually harder for parents to make decisions that will affect their child’s future fertility. But forcing a child to go through a natal puberty that may be leading to suicidal thoughts, that has huge repercussions. We have to balance what’s going to be in the best interest of the child overall.”
Gender-affirming surgery is rare among minors. Both Endocrine Society and WPATH guidelines state that genital surgery should not be performed until a person has reached the age of consent, has lived in their true gender identity for at least 12 months. Chest surgery can be performed based on the physical and mental health status of a transmasculine minor and does not require prior gender-affirming HT, according to Frey-Vogel.
“There are cases where chest dysphoria in transmasculine patients is so severe that they are not able to function and they are not participating in school activities or sports,” Marinkovic said. “They’re extremely withdrawn, they don’t leave their rooms, they don’t leave their house, and having chest surgery before age 18 can be life-changing. Age 18 is typically when teens start preparing for college or may be leaving for college. Having surgery done before they leave home so they can get postoperative care and follow-up at home can make a difference in their surgical outcome.”
Access, legislative obstacles
Although multiple studies have shown pubertal blockers and HT are safe and effective for minors, access to that care remains limited for some youths. Families living in rural areas may need to travel hours to visit a pediatric gender clinic. Even in major cities, the demand for pediatric gender care outpaces the number of available providers. At the UCSF Child and Adolescent Gender Center, Lee said, the multidisciplinary team is projected to see more than 300 new patients in the fiscal year ending in June 2021. In the previous fiscal year, the center saw 225 new patients.
“That’s almost 100 more new patients, and we have not expanded with any new team members,” Lee said. “I’m sure that if this increased demand is here in the Bay Area, there’s likely to be a higher need beyond this region.”
Access is not just about a lack of gender centers. Tangpricha noted there is a shortage of endocrinologists who have the necessary training to provide gender care for youths. And gender care involves multiple specialties.
“Transgender health care is not just prescribing pubertal blockers or gender-affirming hormones, it’s way more than that,” Marinkovic said. “However, some providers may not have multidisciplinary teams or access to experienced mental health therapists or surgeons in their area who will provide expert care to their patients.”
During the COVID-19 pandemic, many gender care visits shifted to telemedicine, which opened a potential new avenue to care. In a cross-sectional survey published in Transgender Health, 85% of gender-diverse youths aged 12 to 17 years who used telemedicine for a gender-affirming clinic appointment in 2020 said they were satisfied with the experience, and 88% said they were willing to use telemedicine in the future. Most of the survey respondents said they preferred an in-person visit for their first appointment, but fewer than half preferred in-person for follow-up visits.
“The growth of telehealth has allowed for some exciting options because a lot of what we do does not require a physical exam,” Frey-Vogel said. “If providers are licensed in multiple states, that would allow for a lot more access for transgender care.”
Although the growth of telemedicine has expanded access to gender care, another recent development could restrict access further. In April, Arkansas became the first state to prohibit gender-affirming treatment for minors, including prescribing pubertal blockers and HT.
The Arkansas law could have implications for families with children wishing to seek gender care. Some may not be able to access gender-affirming care at all, leaving them vulnerable to mental health issues, such as depression or suicidal ideation, whereas others may need to look outside the state.
“Families may be forced to move into bigger states that have more favorable laws,” Tangpricha said. “That would be a disaster, because access would be even worse for people living in small towns. But if the laws keep getting passed like the one in Arkansas, families will have no choice.”
The legislation could also lead to unsafe methods. Frey-Vogel expressed concern about black market distribution of gender-affirming medications, leading adolescents to take hormones without medical supervision and in ways that are less safe.
“These medications are life-saving, and so adolescents may need to self-prescribe gender-affirming HT to protect their mental health if the medications are not available from their doctor legally. But then these adolescents miss out on the support the medical team can provide.
“We do a lot of readiness work, making sure that people understand what their choices are, what the effects are, what we know, what we don’t know about health risks or benefits,” Frey-Vogel said.
The future of gender-affirming care for minors
Arkansas’ prohibition on gender-affirming care for minors has spotlighted the need for provider advocates. Davidge-Pitts said legislation can be based on misconceptions about gender care and credited health care societies and LGBTQ+ organizations for their work countering misinformation with science.
“We need to stress that the policies that surround gender care are science-based and that health care decisions are made as a team with the child, family and health care providers,” Davidge-Pitts said.
Providers are also looking for ways to improve access. Although telemedicine creates an opportunity for clinics to reach patients who live far away, Lee said, that access would further increase if providers could practice across state lines.
Expanding the number of providers in pediatric gender care is also important to improving access. The Endocrine Society has hosted webinars as well as workshops at conferences on gender care for minors, and the WPATH has an education series that leads to a certification in transgender care.
“There are more and more providers educating themselves about transgender health and feeling comfortable providing care,” Marinkovic said. “If you look at meetings, publications and research, this field boomed over the past decade or so in all aspects of medical, surgical and mental health care.”
Some providers are also looking forward to updated guidelines. Frey-Vogel said changes in recommendations on timing of HT should account for more children reaching puberty at a young age.
And more guidance is needed for the treatment of nonbinary individuals.
“Not all patients who seek medical care have traditional binary gender identity,” Marinkovic said. “There are people who identify as nonbinary, gender fluid or queer, to name a few. Understanding their needs and including their voices when developing treatment plans and guidelines is essential.”
One positive expected to continue is the number of support programs and platforms for transgender children. The internet has allowed virtual support programs to reach children in new ways, and transgender social media influencers have helped to erase some of the stigma and provide inspiration for gender-affirming minors.
“We’re in a very different situation than we were 20, 30 years ago,” Frey-Vogel said. “Kids come to me, having seen tons of trans folks talking about their experiences on YouTube, on TikTok, on Instagram. They are already having access to so much more than kids used to have, which has been lifesaving for kids, to be able to look online and say, ‘What I’m feeling is not unique or wrong, and I’m not alone, and there are other people like me, and I can be part of a community and I can be a successful adult.’ Those are huge for kids.”
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- For more information:
- Caroline Davidge-Pitts, MB, BCh, can be reached at email@example.com.
- Ariel S. Frey-Vogel, MD, MAT, can be reached at firstname.lastname@example.org; Twitter: @AFrey_Vogel.
- Janet Y. Lee, MD, MPH, MAS, can be reached at email@example.com; Twitter: @MedPedsEndoMD.
- Maja Marinkovic, MD, can be reached at firstname.lastname@example.org.
- Vin Tangpricha, MD, PhD, can be reached at email@example.com; Twitter: @vtangpricha.