Beyond the guidelines: challenges, controversies, and unanswered questions

Transgender and gender-nonconforming youth have unique medical and psychosocial needs that frequently go unmet. For youth who wish to have their physical appearance congruent with their gender identity, treatment guidelines are available that advocate the use of gonadotropin-releasing hormone (GnRH) analogues (puberty blockers) and cross-sex hormone regimens. Although medical transition was once considered highly controversial, there is a mounting body of evidence that providing a supportive and affirming environment, as well as appropriate medical intervention, results in improved health outcomes. Primary care pediatricians may be unaware of current guidelines and consequently the need for treatment and/or timely referrals. Transgender youth often face other hurdles to initiation of therapy, including refusal of care and harassment in medical settings, denial of coverage by insurance plans, and the high cost of puberty blockers. Because transgender youth younger than 18 years depend on their families for medical decision making, they may be unable to access necessary medical treatment when parents do not support their transition plan. Medical transition impacts many aspects of the medical system, such as insurance coverage, billing, electronic health records, and preventive health care maintenance. These issues may become more apparent with the implementation of the Affordable Care Act (ACA) and increased use of electronic records and clinical decision support. The implementation of the ACA may also present new opportunities and protections for transgender individuals. Primary pediatricians are often the first providers families and youth reach out to for advice, and they can assist families with negotiating these complex medical, legal, social, and economic challenges and optimizing access to safe and appropriate health care services.