In mid-December the New York Department of Health published proposed regulations expanding Medicaid to include transition-related care (full regulatory text available here). Unfortunately, the proposed rule excludes payment for coverage for hormone replacement therapy or gender-affirming surgeries for those under the age of 18. While there are other issues (such as the extensive list of procedures not covered), I felt the denial of coverage for transgender teens was the most important element to address.
The PDF of the comment is available here; the full text of the comment is below.
Before the
New York Department of Health
Transgender Related Care and Services
HLT-50-14-00001-P
Submitted by Emily T. Prince, Esq.
Thank you for your efforts to improve transgender New Yorkers with access to transition-related health care such as hormone replacement therapy and access to gender-affirming surgeries. The proposed rule will significantly improve public health by allowing many Medicaid enrollees to access transition-related care. However, there is one key area where the rule must be modified, to eliminate the requirement that an individual be 18 years or older in order to access transition-related care.
Subdivision (l) of Section 505.2 now reads in relevant part:
(2) Hormone therapy, whether or not in preparation for gender reassignment surgery, may be covered for individuals 18 years of age or older.
(3) Gender reassignment surgery may be covered for an individual who is 18 years of age or older, or 21 years of age or older if the surgery will result in sterilization …
Payment remains unavailable for minors seeking either hormone replacement therapy or “gender reassignment surgery” (herein referred to as “gender-affirming surgeries,” one of several alternatives preferred within trans culture). However, such minors deserve access to medically-necessary transition-related care, and the New York Department of Health should not impose artificial burdens on access to care based on age.
Primary care protocols for transgender minors exist. The Center of Excellence for Transgender Health at the University of California, San Francisco (The Center), dedicated to increasing access to comprehensive, effective, and affirming health care services for trans and gender-variant communities, provides recommendations to health care professionals who treat transgender individuals. With respect to minors, the Center states
See children under 18 with their parents or guardians for treatment, not for assessment. With pre-pubertal children, the primary focus is on providing parental support and education so that a safe environment is developed for the child, and the parents and child know what the treatment options are once puberty begins.
The first visit usually involves getting a complete medical history, reviewing treatment options with the patient or the family, answering all questions and doing some baseline laboratory work. Physical exam is deferred to a second or later visit as per the patient’s wishes, but is required prior to the prescribing of any medication. Social transition, in and of itself (without physical intervention), is possible, and may alleviate dysphoria, at least until puberty.
Youth under 18 are strongly advised to see a mental health professional experienced in transgender issues prior to cross-sex hormone treatment to ensure readiness to transition. Before initiating hormonal therapy with youth over 18, the primary care provider should encourage them to consult a qualified mental health professional to assist them in exploring the ramifications of gender transition, potential complications, etc.
Lack of access to mental health care should not preclude or restrict access to care when indications are favorable that transition will be well-tolerated and socially supported.
If a youth has not completed development (i.e., Tanner V), strong consideration should be given to consulting (provider-to-provider) with an expert in transgender medicine.[1]
The Center’s statements are consistent with the most recent statements of the foremost authority of transgender health, the World Professional Association for Transgender Health (WPATH). As an international multidisciplinary professional association, the mission of WPATH is to promote evidence-based care, education, research, advocacy, public policy, and respect in transgender health.[2] WPATH publishes the Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People (SOC), currently in its seventh version.[3] With respect to children, WPATH writes:
Children as young as age two may show features that could indicate gender dysphoria. They may express a wish to be of the other sex and be unhappy about their physical sex characteristics and functions. In addition, they may prefer clothes, toys, and games that are commonly associated with the other sex and prefer playing with other-sex peers. There appears to be heterogeneity in these features: Some children demonstrate extremely gender-nonconforming behavior and wishes, accompanied by persistent and severe discomfort with their primary sex characteristics. In other children, these characteristics are less intense or only partially present.[4]
With respect to adolescents, WPATH writes:
In most children, gender dysphoria will disappear before, or early in, puberty. However, in some children these feelings will intensify and body aversion will develop or increase as they become adolescents and their secondary sex characteristics develop. . . . Adolescents who experience their primary and/or secondary sex characteristics and their sex assigned at birth as inconsistent with their gender identity may be intensely distressed about it. Many, but not all, gender dysphoric adolescents have a strong wish for hormones and surgery. Increasing numbers of adolescents have already started living in their desired gender role upon entering high school.[5]
As demonstrated by the research WPATH draws upon, minors will experience gender dysphoria and may experience “intense distress” associated with it, absent proper treatment. In the Standards of Care, WPATH goes on to discuss numerous aspects of transition-related care associated with treating minors, further demonstrating that such treatment is seen as both medically necessary and appropriate even withstanding the fact that the person receiving treatment is a minor.[6]
As the Endocrine Society states in its practice guidelines for endocrine treatment of transgender individuals, “Endocrine treatment of transsexual persons should include suppression of endogenous sex hormones, physiologic levels of gender-appropriate sex hormones, and suppression of puberty in adolescents.”[7] In more detail concerning adolescents, the practice guidelines provides the following recommendations:
2.1. We recommend that adolescents who fulfill eligibility and readiness criteria for gender reassignment initially undergo treatment to suppress pubertal development.
2.2. We recommend that suppression of pubertal hormones start when girls and boys first exhibit physical changes of puberty (confirmed by pubertal levels of estradiol and testosterone, respectively), but no earlier than Tanner stages 2–3.
2.3. We recommend that GnRH analogs be used to achieve suppression of pubertal hormones.
2.4. We suggest that pubertal development of the desired opposite sex be initiated at about the age of 16 years, using a gradually increasing dose schedule of cross-sex steroids.
2.5. We recommend referring hormone-treated adolescents for surgery when 1) the real-life experience (RLE) has resulted in a satisfactory social role change; 2) the individual is satisfied about the hormonal effects; and 3) the individual desires definitive surgical changes.[8]
While the Endocrine Society does also suggest that gender-affirming surgeries be delayed until the minor is 18, WPATH notes that some surgeries may be medically appropriate at an earlier age, and further notes that its recommendation is tied to “the legal age of majority to give consent for medical procedures,” not to age per se.[9] As such, the weight of professional opinion is in favor of access to gender affirming surgeries to some transgender minors for whom such treatment is appropriate. Professional opinion is also unambiguous in its support for hormone replacement therapy being available to transgender minors, first with suppression of pubertal hormones for those younger than 16 and later with induced puberty in the affirmed sex at 16, two years prior to the proposed rule’s threshold for access to care at all. The proposed rule’s delay is not a neutral option.
WPATH further discusses the risks of withholding medical treatment for minors:
Refusing timely medical interventions for adolescents might prolong gender dysphoria and contribute to an appearance that could provoke abuse and stigmatization. As the level of gender-related abuse is strongly associated with the degree of psychiatric distress during adolescence withholding puberty suppression and subsequent feminizing or masculinizing hormone therapy is not a neutral option for adolescents.[10]
Forcing minors to delay transition-related care, including suppression of puberty and access to hormone replacement therapy generally, until they reach the age of majority is not a neutral option. It is an option that will substantially injure the affected minors. It is an option that will cause, in the words of WPATH, “intense distress” at the unabated gender dysphoria. It is also an option that will lead to substantial long-term harm.
A recent study from the Fenway Institute discussed the types of harms imposed by denying transgender youth access to care, as the proposed rule will do. The authors state “transgender youth were found to have a disparity in negative mental health outcomes compared with cisgender[11] youth . . . . Identifying gender identity differences in clinical settings and providing appropriate services and supports are important steps in addressing this disparity.”[12] Transgender youth had an elevated probability of depression, anxiety, suicide ideation, suicide attempt, and self-harm.[13] This, the authors explain, “point[s] to the need for gender-affirming mental health services and interventions to support transgender youth.”[14]
This delay can be fatal. In a 2014 study, the Williams Institute and the American Foundation for Suicide Prevention found a lifetime suicide attempt rate of 41 percent in the transgender community, vastly exceeding the 4.6 percent rate among the U.S. population at large.[15] This grossly disproportionate risk of transgender people attempting suicide is linked to the elevated probability of depression, anxiety, suicide ideation, suicide attempt, and self-harm, and it is linked to the lack of access to medically necessary care while still a minor.
Recent events, such as several recent suicides by transgender youth and young adults, demonstrate the costs of the delays the proposed rule will impose, costs as detailed above. The final rule must be amended to no longer restrict access to transition-related medical care to those 18 years or older, to provide minors with access to the care they need to avoid the “intense distress” of gender dysphoria, avoid the increased risk of mental health issues, and avoid the increased risk of suicide attempts.
Sincerely,
Emily T. Prince, Esq.
[1] Youth: Special Considerations, Primary Care Protocol for Transgender Patient Care, Center of Excellence for Transgender Health, University of California, San Francisco, Department of Family and Community Medicine, April 2011 (available at http://transhealth.ucsf.edu/trans?page=protocol-youth).
[2] Mission and Values, World Professional Association for Transgender Health (available at http://www.wpath.org/site_page.cfm?pk_association_webpage_menu=1347&pk_association_webpage=3910).
[3] Standards of Care Version 7, World Professional Association for Transgender Health, 2011 (available at http://admin.associationsonline.com/uploaded_files/140/files/Standards%20of%20Care,%20V7%20Full%20Book.pdf).
[4] Id. at 12 (internal citations omitted).
[5] Id. at 12 (internal citations omitted).
[6] Id. at 10 – 21.
[7] Wylie C. Hembree et. al, Endocrine Treatment of Transsexual Persons: An Endocrine Society Clinical Practice Guideline, Endocrine Society, June 4, 2009 (available at http://press.endocrine.org/doi/abs/10.1210/jc.2009-0345).
[8] Id.
[9] Standards of Care at 21.
[10] Id. at 21 (emphasis added).
[11] “Cisgender” refers to an individual whose gender identity is consistent with their sex assignment at birth, in much the same way that “transgender” refers to an individual whose gender identity is not consistent with their sex assignment at birth.
[12] Sari L. Reisner et al., Mental Health of Transgender Youth in Care at an Adolescent Urban Community Health Center: A Matched Retrospective Cohort Study, Jan. 7, 2015 (available at http://www.jahonline.org/pb/assets/raw/Health%20Advance/journals/jah/feature.pdf).
[13] Id.
[14] Id.
[15] American Foundation for Suicide Prevention and the Williams Institute, “Suicide Attempts among Transgender and Gender Non-Conforming Adults”, Jan. 2014 (available at http://williamsinstitute.law.ucla.edu/wp-content/uploads/AFSP-Williams-Suicide-Report-Final.pdf).