TO: World Professional Association of Transgender Health

We the undersigned are writing as current and former patients who have undergone genital surgery related to our gender identity; Vaginoplasty, Metoidioplasty, and Phalloplasty procedures. Surgeons performing these procedures hold membership in the World Professional Association of Transgender Health (WPATH) and utilize that membership to signal value to prospective patients. In light of this affiliation, we believe that oversight and intervention is necessary to maintain the reputation of WPATH as a whole. The performance of genital surgery for transgender, transsexual, and gender non-binary people is an exceptionally interdisciplinary endeavor, and WPATH is uniquely positioned to reduce harm being done to vulnerable patients by the current lack of oversight. We see the writing of Standards of Care (SOC) v. 8 as an opportunity to make meaningful change.

It is our request that the association evolve to offer a form of accreditation for surgical membership in WPATH. Furthermore, we believe that this change would only be successful with substantial input from a Community Advisory Board of patients. Finally, we envision a collaborative research database to ultimately provide accurate information for surgical providers and patients.

Our Experience

“I have seen horrific unethical practices by surgeons who lie about their experience and horrific results surgically as a result of that. We are using transgender people as guinea pigs and the medical profession allows this to happen.” – WPATH Surgeon¹

The collective experience we share with you is based on our own individual medical histories, on the academic literature, and on publicly-available records detailing the claims of patients choosing to pursue legal action. These experiences should in no way be interpreted to apply to any specific, individual surgeon, nor are they applicable to every surgeon. Most concerning to us are the items that pertain to surgeons currently in positions of leadership, and to those offering fellowships and training opportunities in transgender care.

Our experience is that surgeons in WPATH’s membership are:

Offering free or low-cost surgeries to under-resourced patients in order to gain operating experience in procedures for which they have incomplete professional training. Engaging in pre-operative counseling, academic publishing, and public presentations using complication rates that are: Based on incomplete patient records and insufficient follow up. It distresses us to see academic publications² and other claims regarding our bodily experience that imply a level of follow-up that has simply not occurred. When a surgical center does no routine follow-up on initial surgeries, the cohort of patients on whom they have sufficient longitudinal data to report has an enormous selection bias. Many of us have had our concerns and symptoms dismissed by our initial surgical teams, or do not have the means to return to our initial surgeons and have had post-operative management and revision surgeries elsewhere. Our initial surgeons have no record of these outcomes.

Not inclusive of conditions experienced by patients as complications, such as fistulas, strictures, and tissue necrosis that significantly delayed healing but not requiring surgical correction. Providing insufficient aftercare including but not limited to: Minimizing the severity of symptoms experienced by post-op patients, advising them to delay seeking treatment, escalating the severity of the complication(s)

Directing patients to return home without provisions for continuity of care, leaving us ill-equipped to address time-sensitive complications. In some cases, surgeons are actively dissuading patients from establishing care with local specialists, directing that all complications should be handled through telemedicine with the initial surgical team and emergency department presentation. Providing patients with inaccurate medical information both within and outside their practice, including: Board-certified plastic surgeons claiming to be unaware that nerve coaptation exists and/or is effective in trans male bottom surgery, despite the 35 year history of this technique ³ and documentation of its efficacy in providing sensation ⁴ .

Claiming that all hair follicles can be treated in one electrocautery session intra-operatively Offering experimental procedures without: Counseling patients as to the experimental nature of the procedures

Following the outcomes of these procedures to the degree that would be necessary to meet the burdens of informed consent for subsequent patients

We are writing as patients who are largely based in the United States and English speaking countries in the Global North, but our concerns are not unique to our context, and we write in solidarity with people seeking all transgender, transsexual, and gender non-binary (TGNB) surgical care internationally. Patients who belong to multiple medically-underserved populations are disproportionately affected by these negligent and exploitative practices.

Our Requests to WPATH

I. Accreditation

As evidenced by our experience, the guidance in SOC v. 7⁶ that directly address surgeon readiness and postoperative care is not being followed by a significant portion of WPATH-member surgeons. We find it unacceptable that the only recourse given to patients in SOC 7 is to share information with each other on the internet. The intentions set forth in the SOC have proven themselves meaningless in absence of a structure to hold surgeon members accountable. To protect patients from further harm, there should be immediate action to include an accreditation system for readiness in performing TGNB genital surgery, and further accreditation for surgeons responsible for training and supervision in TGNB genital surgery.

To accomplish this, we request that the co-leads and committees of Chapters XVI (Surgery Chapter for Adolescents and Adults, Postoperative Care and Follow-Up) and XXI (Competency, Training, Education, Ethics) of SOC 8 devise criteria for the accreditation of surgical providers that addresses the following topics:

Readiness to perform TGNB genital procedures, and readiness to provide supervision and training. Recent attempts to quantify the learning curve for vaginoplasty suggest at least 40 operations be performed ⁷ . Currently, many surgeons undertake surgical observation lasting only one week (Milrod & Karasic, 2017) before beginning independent practice. Additional research on learning curves is needed, and surgeons should only be granted WPATH accreditation after carrying out a number of adequately supervised procedures to account for learning curves. Minimum standards for collecting data on complications and outcomes, and guidelines for transparency in communications with patients pertaining to this information. Duty to manage postoperative complications, and duty to provide continuity of care. This should include a structure of coordinated referrals to higher levels of care (reconstructive urology, etc) when complications have proven unmanageable by the initial surgical team, or when the patient does not have the ability to travel to the initial surgical team. Ethical standards for the provision of TGNB surgical care, or explicit guidance on the application of pre-existing ethical standards within their surgical disciplines.



II. Community Advisory Board

We are frankly worried that SOC 8 will not adequately include the surgical patient’s voice in the process. It is disheartening that the co-leads of Chapter XVI are among the authors of a set of guiding principles for TGNB surgery⁸ that did not include patient-validated assessment tools as central to these guiding principles. We are thankful that Smith et al.⁹ reminded the authors of the necessity of this inclusion, and that others clearly value patient-reported outcomes¹⁰ and wish to forward research in that direction, but find it necessary to repeat, unequivocally: There can be nothing about us without us.

We demand the formation of a Community Advisory Board to assist in creating this accreditation path. The current structure of one “community stakeholder” WPATH member per chapter committee is far too little, too late. This advisory board should include representation from TGNB people historically excluded from access to genital surgery; people from the global South, non-heterosexual people, gender non-binary people, and people with psychiatric comorbidities. The community, including non-WPATH member post-surgical patients, should have the opportunity to submit feedback to the community advisory board. The advisory board will synthesize their experiences and concerns to the committees for Chapters XVI and XXI, have members actively participating on the committees, and be responsible for ultimately validating that these voices had an effect on SOC 8.

III. Research Database

It is distressing to us that some of the most current and patient-centered data available is gathered using tools such as the Female Genital Self-Image Scale for postoperative satisfaction with penises¹¹. While this level of error is not endemic, and other projects have been undertaken using the Male Genital Self-Image Scale¹² for the same purposes, it is clear in this and many other examples that surgical research teams do not meaningfully involve patient perspectives in the research design process.

Furthermore, we are familiar with multiple research teams that believe including one or more TGNB researchers or research assistants satisfies their duty for community inclusion. Allowing TGNB professionals to validate concepts created by their cisgender peers will not produce the same effect as formally utilizing the perspective of a diverse group of patients to devise research goals and methods. These research design and other methodological errors create an unacceptable deficiency in the field, with serious impact on patient’s ability to benefit from this research, and to ultimately make informed decisions about our care.

It is our vision that research groups collaborate with patient stakeholders to form a third-party database on these surgeries that are open-access to all professionals and patients. Standardized, patient-validated assessment instruments must be designed to enable cross-surgeon and cross-technique comparative information that would be available to patients. At the least, we hope that reports on outcomes and complications will no longer rely solely or primarily on surgical team self-assessment. Ideally, this project would be able to utilize the outcome data required to achieve the WPATH surgical accreditation.

Conclusion

The ultimate purpose of this letter is to maintain our access to quality care. To that end, we must collaborate with surgeons and WPATH on a sustainable future. We know that there is no perfect procedure, and no perfect surgeon, and we have no desire to hold the surgical community to unrealistic standards. We are thankful that surgeons have chosen to specialize in a historically-marginalized population, and understand that they frequently do so at personal and professional risk. Many surgeons have, to our great relief, stepped in after experiences of mistreatment and dismissal in less ethical hands. We ask you to join with us in creating minimum acceptable practices.

We request acknowledgement of this letter and public reply from the WPATH Board of Directors in collaboration with the SOC 8 co-chairs by June 16th, 2018. Comments, replies, and media requests can be addressed to WPATHopenletter@gmail.com. We welcome working in coalition with other TGNB patient groups.

We welcome more signatures:

Total Signers as of 5/21/2018:192

Public Signers:

Gaines Blasdel

BH, LCSW

Meiko Xavier

Seth Rainess, Speaker/Author

SKT

Charles J. Solidum, Hunter College

J Leonidas

Jordan Rubenstein

Henry Waymack

James Y.

Leonard Pollard

KRO, MA

Jarek Steele

J. Coffman

Ryan Karnoski, MSW, MHP, LSWAIC, NASW member

S. G. Schult

AZ, RN

Jevon Martin

JG

HM

Brian Nienhouse, MS

DMK

LJJ

S. Burke

Álida Pepper

Simone J

Mya Adriene Byrne, Trans activist, international musical performer

N.O.R.

Ryden Allen

Blue Montana, Transgender program manager

L Stetson, PHD

Jay McClintick, University of Arizona

Ember Dangle

AP, RN

AR

SM

Emrys Rintoul

Carla Lewis

Deanna Parkhurst

Shain Attanasio

Madison Wesley, BSChemE

Michelle Gann, RN

E. Vega

Billie Jean Rubic, PhD

CC

Jennie Thomas, Psy.D., M.S., M.A.

Jeannot & Ashley Jonte Boucher

Patricia J Magnuson

Liam Briones MD, MBA, PScD

E

Danielle Castro, MA MFT UCSF COE

Colin Fraley

D Forest

MSN

EP, LCMHC,LADC,NCC

EMR, RN

DAG

G. Cunningham

Noah Adams, MSW

RSH, LP-MHC, NCC

CK, PHD

Anthony Ross, MS Health Education, Santa Clara County Office of LGBTQ Affairs, Transgender Services Program Manager, CA

Colin Close, FTM Sonoma County co-founder and co-director; Transmission co-founder and Director

Shandi Strong

Logan Berrian, BSHS, RN

OJL

CAM

JD, LCSW

Allison Marie Klein

Reese C. Kelly, Ph.D.

Gabrielle Davis, MPH

Devon Mallory

Julian Melson

Institutional Endorsements:

Trans United Fund

References