Pediatric Annals

Guest Editorial Free

Tipping Points in Caring for the Gender-Nonconforming Child and Adolescent

Robert Garofalo, MD, MPH

As a pediatrician who specializes in adolescent medicine, my clinical experience with the transgender community and its health care needs has historically focused on older adolescents, HIV, and the use of cross-sex hormones. In fact, most of my career has been spent working with young transgender women either exposed to or at risk of acquiring HIV—a narrow perspective that, in my opinion, failed to adequately represent the needs of a largely overlooked and marginalized population. But during the past several years, things have begun to change—not only for me, but also for other health care providers and systems of health care delivery. In many ways we have reached a “tipping point” in the care of these young people, moving beyond an HIV paradigm and more broadly considering issues of primary care that arise in both younger children and adolescents. In this issue of Pediatric Annals, we examine those changes with articles that focus on helping pediatricians better understand the complexities of gender-nonconforming youth and providing information to guide primary care practice and provide referral sources for pediatricians in need.

My own journey to some extent began on February 10, 2010. On that day, I was asked to participate in a Dr. Oz Show segment on transgender kids. I clearly was not their first choice as a medical expert (I’m pretty sure it was Norman Spack, MD, from Harvard and Boston Children’s Hospital), and I likely might not have been even their second or third choice. But on February 10, there I was in the NBC studios in New York City, face-to-face with Dr. Oz and a panel of guests, including some very young transgender children and Kim Pearson, a founding member of Transgender Youth Family Allies. I do not know if it was because this was my first time on national television, or the fact that I was going to speak on a subject that was slightly outside of my comfort zone, or that Ms. Pearson appropriately grilled me before airing about my cultural competence and sensitivity with regard to the subject matter and the children on the show, but I was very nervous! I distinctly remember having what can only be described as my “Cindy Brady moment.” (Remember that episode of The Brady Bunch when Cindy Brady appears on television and stares blankly into the camera without uttering a word?) Well, my moment came when Dr. Oz asked his initial question, and for a few seconds—but what felt like hours—I just sat there and stared blankly into the camera, frozen with fear, wanting so badly to be able to say the right things, be maximally respectful to the transgender children and families who were part of the segment, and be knowledgeable for the television audience. In my mind, I remember seeing Dr. Oz’s face turn slightly with concern with a perceived thought bubble of, “Oh my God, my medical expert is an idiot!” But I got past that moment and survived the episode. I learned a lot that day from Ms. Pearson and from the families and children themselves but had no idea how fundamentally my life and career would change thereafter.

Following that episode, suddenly families with gender-nonconforming children as young as 4 years of age began to call and come in for health care. Children, young people, and families from as far away as Arkansas and Kansas (I am in Chicago) were looking for a physician to help provide education, guidance, and care. It started as one patient and then five; slowly at first and then with a greater velocity, my clinical practice began to change. Although I was a pediatrician, I had not been providing much care to young children. The focus on providing care to gender-nonconforming children and transgender youth represented a welcome shift in both my clinical practice and academic career. My learning curve was steep, and I quickly learned a lot from colleagues and friends from across the country, such as Johanna Olson, MD, in Los Angeles and Steven Rosenthal, MD, in San Francisco—many of whom were pioneers in caring for these children and their families for years, often without adequate attention paid to their work or adequate resources to do so in a comprehensive manner. Suddenly, my clinical world changed from discussion of antiretroviral therapy and HIV viral loads to discussions of social transition, gonadotropin-releasing hormone agonists, and the appropriate timing of cross-sex hormones. In 2013, our pediatric hospital, Ann & Robert H. Lurie Children’s Hospital of Chicago, with the support of private philanthropy, launched a multidisciplinary program in gender and sex development. Our faculty, including Lisa K. Simons, MD (pediatrician), Scott F. Leibowitz, MD (psychiatrist), and Marco A. Hidalgo, PhD (psychologist), helped frame an approach to gender-nonconforming patients and their families. Their introductory article in this issue, I hope, will be of help to pediatricians who wish to increase their own knowledge base about this population and perhaps improve the delivery of primary care to gender-nonconforming children and adolescents.

My own journey coincided with what I would describe as a larger national movement in this field. In 2009, the Endocrine Society1 published guidelines for endocrine treatments for transgender patients, including the provision of care for children, peripubertal youth, and older adolescents. Dr. Olson and John Steever, MD, served as first authors of excellent review articles in this issue of Pediatric Annals, providing the primary care pediatrician with a “how-to” practical approach to health care issues, including the use of pubertal blockers and cross-sex hormones, for peripubertal gender-nonconforming youth and transgender adolescents. In addition, in 2010, the National Center for Transgender Equality and the National Gay and Lesbian Task Force2 released a study of more than 70,000 transgender participants and stated at its onset that, “Access to health care is a fundamental human right that is regularly denied to transgender and gender non-conforming people.” It went on to document that many transgender individuals faced discrimination in the health care setting, which often adversely affected access to culturally competent care. Then in 2011, the National Academy of Sciences and Institute of Medicine3 issued a report on the health of lesbian, gay, bisexual, and transgender people. The report acknowledges the historically narrow perspective of viewing transgender people, particularly transgender women, through the narrow public health lens of HIV. It specifically calls for broadening the evidence base for providing transgender-specific health care, including better understanding the health implications of hormone use and other transgender-specific health issues. And lastly, the Affordable Care Act,4 signed into law in 2010 and currently undergoing a national rollout in 2013–2014, prohibits discrimination on the basis of sex (which includes gender identity) in facilities receiving federal funding.

Each of these moments has contributed to us reaching a “tipping point” in the provision of comprehensive care to the gender-nonconforming child and adolescent, and for transgender people in general. Despite these tipping points, controversies in the care of these children persist, especially in areas not covered by the existing clinical guidelines. Anita Radix, MD, MPH, FACP, and Manel Silva, MD, MPH, provide an excellent overview of current controversies in the field and gaps in the existing guidelines. Although multidisciplinary programs like ours remain in their infancy, programs across the country are increasingly rising to the challenge of providing care to these young people and their families. We are pleased as part of this issue to provide one of the first published guides to resources and programs dedicated to caring for the gender-nonconforming child and adolescent patient. We hope that this guide will be useful to the readership of Pediatric Annals and will help pediatricians connect their patients to care teams with the expertise and cultural competence necessary to provide primary care to this specialized pediatric and adolescent subpopulation.

In closing, it is a distinct honor to be doing this work and to be helping provide care to these children and families. I hope the articles contained herein are of practical value to the primary care pediatrician. There remains much work to be done in this area, both clinically and in strengthening the body of clinical research on the outcomes and safety of medical interventions for these children. However, we hope this issue serves as a practical guide to help pediatricians better understand the health needs of gender-nonconforming youth and perhaps serves as a catalyst to further discussion and work in this area.

References

  1. Hembree WC, Cohen-Kettenis P, Delemarre-van de Waal HA, et al. Endocrine treatment of transsexual persons: an Endocrine Society clinical practice guideline. https://www.endocrine.org/∼/media/endosociety/Files/Publications/Clinical%20Practice%20Guidelines/Endocrine-Treatment-of-Transsexual-Persons.pdf. 2009. Accessed May 19, 2014.
  2. Grant JM, Mottet LA, Tanis J. National transgender discrimination survey report on health and health care. http://transequality.org/PDFs/NTDSReportonHealth_final.pdf. October2010. Accessed May 19, 2014.
  3. Institute of Medicine (IOM). The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: IOM; 2011. http://www.nap.edu/catalog.php?record_id=13128. Accessed May 19, 2014.
  4. The Patient Protection and Affordable Care Act, Pub. L. No. 111-148, 124 Stat. 148 (2010).

Authors

Robert Garofalo, MD, MPH, is the Division Head of Adolescent Medicine and Director of the Gender, Sexuality and HIV Prevention Center at Ann & Robert H. Lurie Children’s Hospital of Chicago, where he is also an Attending Physician. Dr. Garofalo is also a Co-Director of the Lurie Gender and Sex Development Program, the first comprehensive program serving gender-nonconforming children and adolescents in the Midwest. He is also an Associate Professor of Pediatrics and Preventive Medicine at Northwestern University’s Feinberg School of Medicine.

Dr. Garofalo received his undergraduate degree from Duke University in Biological Psychology, his doctorate of medicine from New York University School of Medicine, and master’s in public health from Harvard School of Public Health. He completed a pediatric residency at Children’s Hospital of Philadelphia and a fellowship in pediatric advocacy and adolescent medicine at Boston Children’s Hospital. Dr. Garofalo is a national authority on lesbian, gay, bisexual, and transgender health issues, adolescent sexuality, and HIV clinical care and prevention. He is the former past-President of the Gay and Lesbian Medical Association. In 2010, Dr. Garofalo served as a committee member for the National Academy of Sciences/Institute of Medicine Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities.

Address correspondence to Robert Garofalo, MD, MPH, Center for Gender, Sexuality and HIV Prevention, 4711 N. Broadway, Chicago IL 60640; email: rgarofalo@luriechildrens.org.

10.3928/00904481-20140522-06

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