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.

This evening, I attended a meeting titled United & Moving Forward, which was convened by Portland Latino Gay Pride, Basic Rights Oregon, and other local LGBT/queer organisations. The discussion was on the outcome of Proposition 8 in California, which amended the state constitution to ban same-sex marriages, and how communities of colour are unfairly blamed for its passage. I’ve been following similar discussions online for a while, but I was glad to hear from a panel of activists who were actually involved in the campaign against Proposition 8.

On the night of the election, CNN reported on the basis of a small exit poll sample that almost 70% of African-American voters endorsed Proposition 8, leading many in the media to conclude that Black voters, who turned out in record numbers to push Barack Obama into the White House, was responsible for the ban on same-sex marriage, which in turn prompted many angry, often racist statements among (white) gay and lesbian communities that are too depressing to reproduce here (but you know what I am talking about).

At the meeting, a woman from National Gay and Lesbian Task Force explained to the crowd that CNN’s numbers are likely wrong, as it was based on such a small sample of exit polls, and they are working to produce the actual breakdown of Black votes, which appears to be much closer. Many people echoed the sentiment that the media were wrong to portray Black voters as the culprit for denying marriage equality, and we need to challenge those members of our LGBT/queer communities who are lashing out at the wrong people because of the misinformation.

But it concerns me that we are putting so much emphasis on disproving CNN’s numbers. What if they were real? What if 70% of Blacks actually did vote against marriage equality? Does that justify white gays and lesbians lashing out against the entire Black population, even shouting the N-word at them? And doesn’t it say something about the underlying racist bias on the part of white gays and lesbians that white they were so quick to believe the CNN figure in the first place and run with it?

And why is our national leadership so eager to pacify them with “accurate information,” as if the only problem with their racist display of outrage is that they were misinformed? How is it relevant if 50% of Blacks oppose same-sex marriage or 70%–would it become any more acceptable for white gays and lesbians to respond in racist fashion if Black people were in fact disproportionately homophobic?

CNN’s numbers should be challenged, because it is slanderous and harmful to the honour and reputation of Black communities across California. But it is not enough to simply challenge the notion Blacks caused Proposition 8 to pass; the LGBT movement needs to confront ugly bursts of racism within our communities as such, rather than providing excuse for it by pretending that people who lash out are merely misinformed.