Pediatricians play ‘critical’ role in care of transgender youths
Gina Sequeira, MD, MS, is worried that an increasing number of states are proposing legislation that would ban access to gender-affirming health care for minors, even when they have parental consent.
“Fearful is one word. Horrified is another,” Sequeira, an adolescent medicine fellow at UPMC Children’s Hospital of Pittsburgh who has been working with transgender youths for years, told Infectious Diseases in Children.
“The fact that the government will be able to dictate what I can and can’t do to support my patients and their families is really horrifying,” Sequeira said. “As a physician, to be threatened with jail time for providing the type of care that I do every day — I’m honestly not sure how to put that fear into words.”
According to data from the Youth Risk Behavior Survey, approximately 2% of adolescents in the United States identify as transgender. In addition to state-level efforts, the Trump administration has reportedly planned to roll back transgender patient rights established under a section of the Affordable Care Act that protects transgender individuals from discrimination in the health care setting.
“I’m worried about the implications these bills will have on my patients, specifically on their mental health,” Sequeira said. “Many of my patients have already struggled with depression and suicidality, and I am very worried that should bills like this become a reality, their mental health symptoms will worsen significantly.”
Sequeira said pediatricians play a “critical” role in supporting transgender youths and their families, a relationship based on trust that has been built up over years. Infectious Diseases in Children spoke with Sequeira and other experts about caring for transgender adolescents in the U.S.
“I think actually having conversations with young people as they’re developing, and as they’re getting older, during routine well-visits is a perfect time to open a door to have a conversation with young people about how they see their gender, talk with their families about that, ask if they have any questions or would like to discuss that during the visit,” Sequeira said. “This is something I think can be an amazing opportunity for pediatricians to be able to open that door for young people to talk about.”
A major factor in providing competent care for an adolescent who identifies as transgender is their sense of security. In a recent study, Sequeira and colleagues reported in the Journal of Adolescent Health that many transgender adolescents do not feel comfortable sharing their gender identity with their pediatrician, even in situations where it would be important for health reasons.
“My hope is one day we get to a place where every clinician, regardless of their specialty, has the basic knowledge and skills to be able to conduct a visit with a transgender patient without hesitation and without the patient being made to feel uncomfortable or disrespected because of their identity,” she said.
Crucial to making transgender patients feel comfortable is using the correct pronoun and calling them by their preferred name, experts said. Rob Garofalo, MD, MPH, division head of adolescent and young adult medicine at Lurie Children’s Hospital of Chicago, said health care providers can identify transgender patients by being open and asking them which pronoun and name they prefer.
“A lot of this, when they’re younger children, is brought to the attention by parents who recognize gender expressive behaviors that are not necessarily consistent with a natal sex,” Garofalo, who is also a professor of pediatrics at Northwestern University Feinberg School of Medicine, said in an interview. “They might see children who want to wear their hair long or short, inconsistent with their natal sex. There are some children who express not being comfortable with the anatomic parts they were born with.”
Cora Breuner, MD, MPH, FAAP, attending physician in adolescent medicine at Seattle Children’s Hospital and member of the AAP’s Forum Management Committee, said maintaining a safe clinical space can provide “a protective sanctuary” for transgender patients and their families, giving them a space where they can have authentic gender expression and exploration.
“The U.S. Centers for Medicare and Medicaid Services and the National Coordinator for Health Information Technology now require that all electronic health record systems certified under the Meaningful Use incentive program have the capacity to confidentially collect information on gender identity,” Breuner, who is also a professor of pediatrics at the University of Washington, told Infectious Diseases in Children. “Explaining and maintaining confidentiality procedures promotes openness and trust, particularly with youth who identify as LGBTQ.”
‘Playing catch up’
According to Garofalo, transgender care has become a pediatric and adolescent subspecialty in some places. It is not part of standard training for most physicians, but medical schools around the country are trying to implement instruction in transgender care into the curriculum, said Alex S. Keuroghlian, MD, MPH, who heads the federally funded National LGBT Health Education Center at the Fenway Institute in Boston.
“You want to incorporate, wherever appropriate, a more expansive and accurate understanding of sex assigned at birth, gender identity, gender expression, an understanding of concepts and terminology, stigma and gender minority stress, and how that’s related to health inequities experienced by transgender and gender-diverse people and best practices with regard to sensitive, effective communication, clinical practice and specific specialties like internal medicine, surgery and psychiatry, for example,” Keuroghlian told Infectious Diseases in Children.
Keuroghlian said a primary purpose of the National LGBT Health Education Center is to help train care teams to provide skilled and sensitive care for transgender and gender-diverse patients. He said gender identity solidifies as young as 3 or 4 years old for many people.
“We do a lot of continuing education because physicians are playing catch up to learn how to provide culturally responsive, effective care for transgender and gender-diverse children and adolescents,” he said. “It needs to be part of the standard medical curriculum, nursing curriculum, social work curriculum and psychology curriculum. There are huge gaps in knowledge, skills and beliefs and attitudes that need to improve through better education and training in a population-centered way.”
Sequeira, who went through her medical training about 10 years ago, said it was far different than today. In terms of care and how to approach transgender patients, Sequeira said there is a movement toward incorporating this type of instruction into formal medical education, but there is still a generation of providers who did not receive this education unless they sought the knowledge themselves.
“I think there really is a unique space for those of us who have sought out additional training on trans health,” Sequeira said. “To be able to impart some of that education to general pediatricians to make sure they feel more comfortable talking with young people and their families about gender is really important.”
(Editor’s note: For a story on the barriers faced by transgender patients who want to pursue fertility preservation, click here.)
Keuroghlian said pediatric care teams can access a wide range of free webinars, best practice briefs and trainings by leading experts at LGBTHealthEducation.org, which also offers continuing education credits.
“The reality is that presently, not everybody is entirely comfortable working with transgender people within a medical environment,” Garofalo said. “I think that’s a real goal.”
Data suggest that patients who identify as transgender are at a higher risk for certain STDs and other infections. Specific subsets of the transgender community — particularly transgender women of color — are at a higher risk for acquiring HIV.
“It wasn’t too long ago that the lion’s share of people who cared about transgender individuals did so through an HIV lens,” Garofalo said. “Increasingly, that’s no longer the case, and the transgender community is better served by not being seen through those types of specific lenses ... like suicide or substance use or HIV or sexual risk, as opposed to just being seen as who they are: a diverse set of people with a full range of health care issues and problems not that much different than the general population.”
Findings suggest transgender individuals experience higher rates of depression, anxiety, eating disorders, self-harm and suicide. Breuner noted one retrospective cohort study that showed 56% of youths who identified as transgender disclosed previous suicidal ideation, and 31% reported a previous suicide attempt, compared with 20% and 11%, respectively, among matched cisgender youths.
“It is imperative to address health and mental health disparities faced by transgender communities,” Breuner said. “On a daily basis the transgender population experiences discrimination that precludes their access to and participation in standard quality-affirming health care.”
Keuroghlian said the stigma that transgender youths face can lead to disruptions in “certain general psychological processes” like coping skills, emotional regulation and interpersonal interactions.
“We think it’s related to what we see in the research, which is a much higher prevalence of various behavioral health problems — for example, depressive disorders, anxiety disorders and substance use disorders — as a way to cope with all this stress, and how these are linked to decreased self-care, decreased engagement in primary care, and down the road, a much higher prevalence of various physical health problems among transgender and gender-diverse people,” Keuroghlian said.
Last May, The New York Times reported that the Trump administration had proposed to roll back civil rights safeguards that protect transgender patients from being discriminated against in a health care setting. The proposed regulation would redefine gender based entirely on a person’s genitalia at birth, a move that would endanger transgender patients’ access to appropriate care, health leaders warned. Critics are concerned that the regulation could allow providers to refuse to treat any patient who did not identify as their natal sex.
“Honestly, there is a rash of current legislation that has made the work that we are doing here at Lurie potentially criminal,” Garofalo said. “It criminalizes it. I think that that is the most heinous and really misguided attempt at legislation that I’ve seen in a very long time.”
The legislation would revise the nondiscrimination provision in the Affordable Care Act, which prohibits discrimination based on race, color, national origin, sex, age or disability in any health program or activity. The rule proposed that the term “gender identity” means a person’s “internal sense of gender.”
“Transgender youth right now are at the crossroads between public health and human and civil rights in a way that I haven’t seen since the early days of the HIV epidemic,” Garofalo said. “To criminalize people accessing what I consider appropriate health care, which saves lives, really should be criminal in and of itself. It’s largely the people who are introducing or attempting to pass this legislation, in my opinion, who probably don’t know anything about this discipline and by and large probably have never met many transgender people in their lives.”
Garofalo said things have gotten better for the transgender community in the last 5 to 10 years, but there is still more work to be done. He said when he first started his clinic in 2013, it was one of only a handful of sites doing research and work with the transgender community. Now, there are programs all over the country.
“I think we have to continue to keep our eye squarely focused on quality [of care], as well as access,” he said. “That’s something that I think sometimes we lose sight of, and I think the transgender community — just like any other community — needs to continue to demand, not just easier access, but the highest quality of services.”
Garofalo recalled hearing former Attorney General Loretta Lynch directly address young transgender people when she announced in 2016 that the Justice Department was filing a federal civil rights lawsuit against North Carolina over a state law requiring transgender people to use bathrooms corresponding to their assigned sex at birth.
“That was a landmark moment of someone high up in the federal government acknowledging who these young people are and allowing them to be seen,” he said. “I would say that since Trump has been in office, I think many of those attempts have been to erase a lot of those advances and to push some of this work back into the shadows.” – by Ken Downey Jr.
(Editor’s note: There were indications in the press at the time of publication that the Trump administration was close to implementing its rule change. Information in this story was up to date at the time of publication. To access the latest updates, visit our LGBTQ+ Health Updates Resource Center at www.Healio.com/LGBTQHealth.)
- Federal Register. Nondiscrimination in health programs and activities. https://www.federalregister.gov/documents/2016/05/18/2016-11458/nondiscrimination-in-health-programs-and-activities?utm_campaign=subscription+mailing+list&utm_medium=email&utm_source=federalregister.gov. Accessed May 2, 2020.
- Goodnough A, et al. Trump administration proposes rollback of transgender protections. The New York Times. https://www.nytimes.com/2019/05/24/us/politics/donald-trump-transgender-protections.html. Accessed May 2, 2020.
- Johns MM, et al. MMWR Morb Mortal Wkly Rep. 2019;doi10.15585/mmwr.mm6803a3.
- Rafferty J, et al. Pediatrics. 2018;doi:10.1542/peds.2018-2162.
- Sequeira GM, et al. J Adolesc Health. 2020; doi:10.1016/j.jadohealth.2019.12.010.
- For more information:
- Alex S. Keuroghlian, MD, MPH, can be reached at email@example.com.
- Gina M. Sequeira, MD, MS, can be reached at firstname.lastname@example.org.
- Rob Garofalo, MD, MPH, can be reached at email@example.com.
- Cora Breuner, MD, MPH, FAAP, can be reached at firstname.lastname@example.org.
Disclosures: Breuner, Garofalo, Keuroghlian and Sequeira report no relevant financial disclosures.