Recommendations on Medicaid funding of surgeries for intersex individuals

Recommendations for Colorado Department of Health Care Policy and Financing
Re: Medicaid Funding for Remedial Surgeries for DSD

Emi Koyama
Director, Intersex Initiative

My name is Emi Koyama and I am the director of Intersex Initiative, a national advocacy organization for people born with intersex conditions, or disorders of sex development (DSD) as they are referred to within the medical community.

I have studied the draft Colorado Medicaid Policy titled “Disorders of Sexual Development (DSD or intersex) Surgical Remediation,” and wish to offer following recommendations.

1. First thing first: the correct medical term is Disorder of Sex (not “Sexual”) Development. (And when not referring by this established medical terminology, I prefer to use “anomalies” over “disorders.”)

2. Philosophical statement must make a clear distinction between “gender assignment” which is a social and legal determination of one’s sex of rearing, and surgical reinforcement of the assigned gender. The controversy is not whether or not children should be assigned gender: it is whether social and legal assignment of gender should be accompanied by cosmetic surgical alterations of the child’s genitalia before the child is old enough to be involved in the decision-making. I believe not.

3. The philosophical statement also seems to presume that the main risk of early cosmetic genital surgeries is the accidental assignment of the “wrong” gender. While this is a major concern, it is not the only one. Any surgeries on such sensitive areas risk damaging the child physically, psychologically, and sexually–which is why advocates argue that they should not be performed without the child’s participation, unless of course there is an urgent medical necessity. Perhaps Medicaid is not able to take either side of this controversy at this point, but critics’ concerns should be accurately reflected in the document.

4. I applaud the draft for acknowledging the need for multidisciplinary approach to treating children with DSD. That said, if Medicaid were to recommend multidisciplinary team to care for these children, it must also provide payment for counselors, psychologists and social workers who will assist patients and parents as part of the multidisciplinary team. Counseling for parents or other caregivers is a critical part of providing competent care for children with DSD.

5. Some surgeries performed on children with DSD result in sterilization. The policy statement should specifically require any parent or physician seeking these surgeries to be extremely cautious and abide by all existing State laws and Medicaid regulations on sterilization on minors or legally incompetent people in order to protect the rights of children with DSD.

6. Medicaid is mandated to cover out-of-state medical expenses as well as travel expenses for the patient and the accompanying parent if providers with adequate experiences or specialization in the specific procedure being prescribed cannot be found in the State Medicaid system. The policy statement should include this information instead of simply stating that “The provider must be enrolled with Colorado Medicaid.” Further, funding for in-state medical travel should be included as well if a qualified provider cannot be found in the immediate area where patient and his or her family live.

7. “Gender transformation surgery” does not encompass a wide range of surgical procedures performed for children with DSD with or without the assent of the patient (e.g. vaginoplasty for a female with DSD does not transform her gender in any way, but simply reinforces it). The statement should state that all medically recommended surgeries are covered, preferably with the assent of the patient himself or herself, in addition to the “gender transformation surgery.”

8. I support Colorado’s leadership in acknowledging that “gender transformation surgery” should not be rushed at the time of birth. However, the timing of the surgery should not be limited to just two options (at birth or at puberty). At minimum, Medicaid should cover such surgeries that take place anytime in the patient’s adolescence and even young adulthood, allowing full time for the individual to explore and develop a sense of who he or she is.

9. The sentence denying coverage for “trans-sexual surgery” is unnecessary and potentially harmful. The next revision of Diagnostic and Statistical Manual of Mental Disorders (DSM) is expected to change the definition for Gender Identity Disorder (which is associated with transsexuality), allowing children and adults with DSD to be diagnosed with Gender Incongruence (a new name for GID). In other words, a child may be diagnosed with both DSD and GI, which puts two sentences in this policy statement (coverage for “gender transformation surgery” for children with DSD and denial of coverage for “trans-sexual surgery”) in conflict with each other.

Besides, whether or not Medicaid covers sex reassignment surgeries for transsexual people should be specified in a separate policy statement, and is irrelevant to the issues addressed in this statement. I believe that it is quite sufficient to state that “Gender transformation is not covered under this policy when the diagnostic criteria for DSD are not met.”

(Also, I fully support Medicaid funding for sex reassignment surgeries for adult transsexual people who seek them. I understand that this discussion is not the time or place to advocate for such policy change, but we cannot in good conscience be completely silent about the struggle of our transsexual friends and allies, many of whom have advocated for intersex rights.)

Thank you very much for giving me an opportunity to make these recommendations. I am also sending you a copy of the draft statement with suggested edits. Please feel free to contact me if you have further questions, as I would be delighted to provide more information.

Anne Tamar-Mattis, a California attorney and the executive director of Advocates for Informed Choice, said that she is also available to answer any questions. Her phone number is XXX-XXX-XXXX and email address is XXX@XXX.XXX. In addition, Nancy Ehrenreich is a Professor of Law at University of Denver’s Sturm College of Law, and is knowledgeable about legal issues surrounding surgical treatment of children with DSD. Her phone number is XXX-XXX-XXXX and email address is XXX@XXX.XXX. They may be able to offer further insights that I am missing.