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With a name sounding more like something out of a sci-fi film, the US National Institutes of Health in partnership with former medical leaders of transgender industry group WPATH (World Professional Association for Transgender Health) have formed “TransNet”, a research consortium merging commercial, academic, and government interests in data collection, funding, and regulation of the medicalization of gender. The project aims to set the groundwork for the mainstreaming of transgender medical care by conducting research that supports the practice.

Recent Obama administration changes to Medicare/VA/IRS regulations allow for taxpayer subsidized cosmetic breast implants, facelifts, genital re-shaping and off-label drugs as treatment for transgender individuals. These patients seek to alleviate distress caused by possessing what they believe are innate psychological or mental traits related to the reproductive biology of the opposite sex. The goal of the treatments is an attempt to create the appearance that their bodies are the opposite sex: the sex the patient believes is congruent with their experienced personality traits. But such interventions (and beliefs) have no established scientific rationale. While there is indeed a political will behind performing these treatments, a very profitable medical/psychiatric/therapeutic industry to accommodate them, and an increasing number of patients demanding the treatments, there is an absence of science to support them.

Self-diagnosed consumer-driven “pathology” that mainly afflicts objectively healthy patients seeking off-label care has been a boon for providers and suppliers such as cosmetic surgeons, pharmaceutical companies, rogue physicians and gate-keeping therapists but there comes a point- say, when government bureaucrats become involved, that certain boxes need to be checked and forms filled out.

None of the only fifty or so “sex-change” surgeons worldwide that provide genital reconfiguring for this population accept Medicare reimbursed clients. And why would they? Their specialty has thrived as an underground economy. Their procedures are incredibly risky with high rates of complication. Long-term outcomes are, objectively, poor. Yet their clients will pay through the ear, and sign waivers to boot, and are lined up on waiting lists.

You would think surgeons would be clamoring to get aboard this gravy train but they aren’t. New York State and Massachusetts provider networks have been aggressively recruiting surgical providers for over a year since their states’ Medicaid began covering these procedures, to no avail. The only surgical group that stepped up in California when the Department of Corrections mandated the high-profile state-funded surgery for incarcerated murderer Jeffrey “Michelle” Norsworthy was Brownstein and Crane, whose practice specializes in bilateral mastectomies for healthy genetic females who believe their personalities are in conflict with their secondary sex characteristics.

The mainstreaming of medical body modification for those who clamor to look like members of the other sex has outpaced the usual steps that precede any generic medical care: basic scientific research. While authorities in medicine, government, and the highest courts have jumped on an opportunity to “correct” those who struggle at conforming to social sex-roles (not coincidentally rolling-back decades of gains made by the women’s liberation movement), they did so using the aegis of WPATH, the World Professional Association of Transgender Health, a transgender industry lobbying group comprised of two groups: those who seek such body modification and those who make a good income providing it.

WPATH had never based their suggested practices on any scientific study, which was unnecessary to represent the interests of their two codependent groups of constituents. The American Psychiatric Association however, who invented the pathology of Gender Identity in the first place, lurched awake in 2008 after thirty years of slumber and decided that maybe now was the time for some follow up to their Diagnostic and Statistical Manual GID (Gender Identity Disorder)/ GD (Gender Dysphoria) diagnosis. Some sort of data or guidelines related to the care of this population would be appropriate, in light of the explosion of numbers of patients now presenting with this diagnosis. WPATH, whose last transgender “Standards of Care” had been issued in 2001, realized that they needed to start presenting themselves as an evidence-based authority. They publicly resolved to create new, updated, plausibly authoritative Standards, this time including research citations.

But there was no science. The WPATH board was infested by grifters such as Randi Ettner,PhD who specializes in pseudoscientific “energy” and “body meridian” psychology and her husband Frederic who runs a family practice for anti-vaxxers and sponsors testosterone mills (“Low T?”) for men desiring rejuvenation.

In 2009 two mainstream doctors, both providers to transgender clients, saw the pseudoscientific writing on the wall and attempted to stay the inevitable WPATH disaster. They collaborated to produce a document pointedly suggesting evidence-based revisions to the WPATH standards of care. These physicians were Dr. Jamie Feldman, a family practitioner specializing in transgender care and doctorate of anthropology and associate professor at University of Minnesota and Dr. Joshua Safer, an endocrinologist and associate professor at Boston University.

Their paper: “Feldman, J., & Safer, J. (2009). Hormone therapy in adults: Suggested revisions to the sixth version of the standards of care.” was cited 22 times in the eventual 7th edition WPATH standards of care [PDF].

Despite the efforts of Feldman and Safer, the APA announced they rejected WPATH Standards due to the overall lack of scientific research supporting them, and would begin the long process of formulating their own evidence-based recommended treatment guidelines. The APA issued press releases to calm the resulting panic in the transgender patient population. They affirmed APA support of the Gender Identity diagnosis and their intent to continue authorizing medical body modification services to those so afflicted. “The quality of evidence pertaining to most aspects of treatment in all subgroups was determined to be low; however, areas of broad clinical consensus were identified and were deemed sufficient to support recommendations for treatment in all subgroups.” 

Doctors Jamie Feldman and Joshua Safer are at the helm of the new NIH TransNet project.

Project Goals at the initial TransNet meeting, “TransNet: Developing a Research Agenda in Transgender Health and Medicine”, which was held this May in Washington DC, included:

“1) further develop a productive transgender health and medicine research consortium that would become a national forum for an evolving comprehensive research agenda in transgender health, as well as a mechanism for interdisciplinary collaboration in research on cross-sex hormone therapies, surgical interventions, STI/HIV prevention, and trans-appropriate primary and mental health care; 2) develop new research methodologies effective in conducting clinical research with transgender people, a stigmatized, vulnerable, and underserved population; 3) develop and use of standardized approaches to data collection, management, and analysis across a variety of clinical and non-clinical settings; and 4) incorporate community engagement in the research process within the structure and function of the consortium, including transgender community advisory representatives, LGBT community health centers, and community engagement procedures throughout the research process.”

Project Number: 1R13HD084267-01 Contact PI / Project Leader: FELDMAN, JAMIE
Title: TRANSNET: DEVELOPING A RESEARCH AGENDA IN TRANSGENDER HEALTH AND MEDICINE

http://projectreporter.nih.gov/project_info_details.cfm?aid=8922636&icde=25266267

One of the interesting implications of the TransNet project is the development of a National Institutes of Health “national database of transgender persons”. From the Daily Free Press:

“Members of the NIH are hoping to develop a national database of transgender people to see what trends appear from different types of intervention. “They want to know what kind of things we could be learning over the next five or ten years depending on how much money is available for research, and the purpose of this conference is to set that strategy and create some priorities for NIH,” [Dr. Joshua Safer] said.”

Such a database has been a long-running goal for Dr. Safer, author of “Out of the Shadows: It is Time to Mainstream Treatment for Transgender Patients (2008)”.

Safer created one himself at Boston Medical Center but due to HIPAA regulations patients were required to give informed consent to being listed in the registry:

“[O]ur work includes the development of a Transgender Health Registry at BMC.  All transgender-identified individuals who have had hormone therapy or other transgender health care management at Boston Medical Center (BMC) who give consent to participate will have their name, date of birth, and medical record number recorded in a registry. By compiling a list of those treated here at BMC, researchers (approved by the Institutional Review Board) will be able to access more complete data when studying the long term effects of hormonal treatment and/or other aspects of care.  It is our hope that by establishing the first BMC registry of Transgender Health, we will be able to better serve individuals who identify as transgender within our community both now and in the future.” [sic]

The coming TransNet national database of transgender people, operating and funded by the National Institutes of Health under the authority of the Department of Health and Human Services, using standardized and regulated data collection, promises to be the most vast and comprehensive pool of research subjects ever studied in the history of the medical industry practice of treating gender.

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