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.

After a month or two of scholars and intersex activists challenging the prenatal dexamethasone treatment on fetuses suspected of having congenital adrenal hyperplasia (CAH) designed to prevent the virilization of clitoris, the pro-dex doctors are starting to publicly defend the controversial treatment.

In Bioethics Forum, a blog published by Hastings Center and where Hilde Lindenmann, Ellen Feder, and Alice Dreger have previously published a piece criticizing the treatment, two articles defending the treatment have been published.

• Ambiguous Genitalia: To Treat or Not by John Lantos
• Not Fetal Cosmetology by David A Diamond, Jeffrey Ecker, Ingrid Holm, Susan Kornetsky, Christine Mitchell, and Norman Spack

In addition, there is a research review paper in the current issue of Obstetrics and Gynecology Survey which apparently suggests that the dexamethasone treatment has benefits (But what is the “benefit” they are talking about? Not being born intersex?).

I had also written my own response, which was posted on Bioethics Forum, to the scholars’ letter of concern about dexamethasone treatment (“letter of concern from bioethicists”) to express my broader concern about the field of bioethics and role it plays in legitimizing ethically troubling medical treatments designed to address social problems.

While I haven’t been able to read the Obstetrics and Gynecology Survey piece yet (although it seems to be a straightforward review paper), both of the responses in Bioethics Forum seem to be exactly the examples of the problems with the field of bioethics that I was trying to address in my own piece.

Lantos epitomizes the tendency for pediatric bioethicists to endorse “let the parents decide” model whenever an ethical question is raised about any particular treatment, rather than seriously considering social and ethical implications of such treatment. It’s interesting that he calls for the “marketplace of ideas and marketplace of medical treatment” to sort it out, as it apparently would mean that bioethicists should have an opinion one way or another only when evidence is completely on one side of the debate, a scenario that does not require bioethicists in the first place. Who needs bioethicists if marketplace is competently guided by the invisible hands of God?

Diamond et al. (I only recognize the names of Diamond and Spack among them) embodies another problem with the bioethics, that is the main concern of my essay: bioethics’ obsession with regulatory mechanisms and procedures rather than the actual ethical considerations. I feared that Alice Dreger’s and others’ critique of Maria New’s practice as an un-authorized, un-supervised human subject research involving off-lable medication would only lead to a kinder, gentler version of the same practice under full IRB review, and that appears to be precisely what Diamond et al. are calling for. That is definitely an improvement over the current situation, and perhaps it’s a step we must go through, but I really don’t want to wait for ten or more years before the registry begins to produce useful information.

I want to write more, but I have to finish writing grant proposal to get a new group for queer people with developmental disabilities funded due Monday (and it’s 12:30am on Monday) and get ready to fly out to the East Coast in less than 24 hours…

By the way, if you happen to be near Providence, I’m presenting a workshop at Brown University on Wednesday, March 17th as part of Brown’s Pride Series 2010. The workshop is titled “Transgender inclusion, or Demilitarizing the Borderlands of Binary Gender System.” See their site for more info.

I have to get busy packing, since I’m heading to the airport very soon (off to Madison, Wisconsin, to attend/present at Midwest Bisexual Lesbian Gay Trangender Ally College Conference), but I want to announce that my article, “Why I am Suspicious of Bioethics,” was published in Bioethics Forum, an online publication of Hastings Center (title was decided by the editor, not me).

It’s partly about the prenatal administration of off-label medication intended solely to prevent genital virilization (clitoral enlargement in this case) in female fetuses, and also about the controversial “growth attenuation” treatment for children with severe developmental disabilities but it’s also about something larger: how bioethicists are becoming enforcers of established procedures and protocols (which are, after all, determined by the medical community) rather than instigators against injustices in medicine whether or not specifically prohibited by existing policies.

Anyway, I don’t have the time to discuss the article further, so go ahead and read on…

I’m going to Eugene this Friday to present at Beyond Patriarchy conference. I was originally planning to do two workshops (one on intersex activism and another on sex worker feminisms) but due to my schedule (I’m hosting Good Asian Drivers‘ stop at In Other Words bookstore in Portland on Saturday) I can only do the latter. That said, I thought you might enjoy reading the description I wrote up for the intersex workshop:

Obviously, this is all tongue-in-cheek… Most intersex people identify and live as men or women just like most non-intersex people, so it’s not correct to assume that intersex people are somewhere between men and women… See “What is wrong with ‘Male, Female, Intersex’” at Intersex Initiative’s website.

Since I’m posting the information, here’s the description for the workshop I’m actually presenting:

The workshop will be held at Century Room A, Erb Memorial Union at University of Oregon at 3:35pm on Friday.

Email I received at Intersex Initiative.

The first “*****” is part of an email address; the latter is a name of a City.

I get these emails at least once a week. ISNA must receive it every day, if not every hour. I usually just ignore, but today, after an upsetting episode at Wal-Mart which they sucked me into with its $4/month prescription generic medication, I found some energy to respond. Here goes:

Just to clarify: I’m not against fetishes or fetishists. I’m against someone insensitive enough to send such email to an organisation that is trying to change the society so that intersex people would be treated as people, not just some object of others’ fantasy or being reduced to just the sex organs.