December 28, 2015
James Rollins, MD, Director, Division of Items and Services
Linda Gousis, JD, Lead Analyst
Centers for Medicare and Medicaid Services
Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244
Re: National Coverage Analysis for Gender Dysphoria and Gender Reassignment Surgery, CAG-00446N
Dear Dr. Rollins and Ms. Gousis:
Whitman-Walker Health (Whitman-Walker or WWH) is pleased to offer these comments on the need for a National Coverage Determination (NCD) on Gender Dysphoria and Gender Reassignment Surgery, in response to the proceeding opened by CMS on December 3, 2015.
We commend CMS’s determination “to review the available evidence and conduct a … review to determine whether health outcomes are improved from treatment for Gender Dysphoria and Gender Reassignment Surgery.”1 As a health care center with a history of serving transgender patients, we strongly support the creation of an NCD that covers the full range of therapeutic – including surgical options to treat gender dysphoria.
Interest and Expertise of Whitman-Walker Health
Whitman-Walker is a Federally Qualified Health Center located in Washington, DC. Our mission is to be the highest quality, culturally-competent community health center serving greater Washington’s diverse urban community, with a special focus on LGBT individuals and families, persons living with HIV, and other individuals and families who face barriers to accessing care. We offer primary medical for all individuals, including those living with HIV; LGBT primary and specialty care, including transgender care; dental care; mental health care and addictions counseling and treatment; nurse care management; HIV education, prevention, and testing services; other community health services; and legal services. Our medical team includes internists, family medicine physicians, infectious disease specialists, physician assistants, and nurse practitioners; and our behavioral health providers include psychiatrists, licensed clinical social workers, and licensed professional counselors. In calendar year 2014, we provided health services to more than 14,700 distinct individuals. Transgender and gender nonconforming individuals comprise a substantial and growing part of our patient and client base: approximately 13% of our medical patients; 20% of persons receiving mental health services; 8% of those receiving substance abuse treatment services; and 6% of all those receiving any health services.
By implementing an integrated care model, we ensure that a range of client needs are identified and addressed and that service delivery is coordinated. Transgender persons utilize all WWH services, with a range of transition-related care provided by our medical and behavioral health providers, including hormone therapy, laser hair removal, and individual and group therapy. WWH also holds two “Trans* Peer Support Groups” specifically for individuals across the gender spectrum and in any stage of transitioning. The focus of the groups is to promote social support and wellbeing for transgender, gender non-conforming or gender queer adults, with topics including navigating transition, coming out, family and workplace issues, relationships, dating, and other issues. WWH also provides referrals for gender-affirming surgeries, and the documentation required to undergo such surgeries. In addition, we provide ongoing primary care and behavioral health services for many transgender patients after they have undergone surgery.
Whitman-Walker Health’s Legal Services Program also has extensive experience serving the transgender community in a variety of ways, including the monthly name and gender change clinic. We frequently assist transgender clients with discrimination or harassment claims in the workplace, at school, in housing, with government agencies, hospitals, and public accommodations and with public benefits navigation, consumer matters, estate planning, and immigration relief. In the 12 months ending October 31, 2015, legal services were provided to 507 transgender individuals - approximately 20% of our total legal clients.
Lack of adequate insurance coverage for their health care needs – including surgery – is a fundamental concern for our transgender patients and legal clients of every age, including the considerable number of our patients who are enrolled in Medicare. We are heartened by CMS’ commencement of this proceeding, and offer our considerable experience as providers of health care to almost 1,000 transgender patients every year, to support the issuance of a comprehensive NCD for surgical and other treatment of gender dysphoria.
The Health Benefits of Surgical and Other Treatments for Gender Dysphoria
Scientific research provides robust evidence of the benefits, and the medical necessity for many individuals, of a wide range of surgical as well as hormonal treatments to alleviate gender dysphoria. Much of the evidence was evaluated and endorsed in the May 30, 2014 decision of the HHS Departmental Appeals Board (Appellate Division). NCD 140.3, Transsexual Surgery, Docket No. A-13-87, Decision No. 2576, available at http://www.hhs.gov/dab/decisions/dabdecisions/dab2576.pdf. Additional evidence is compiled in the “Summary of Clinical Evidence for Gender Reassignment Surgeries,” submitted in this proceeding by the Transgender Medicine Model NCD Working Group. On the basis of this evidence, and extensive clinical experience of providers, leading health care professional associations have endorsed gender transition a wide range of surgeries and other treatments, including the American Medical Association, American Academy of Family Physicians, the Endocrine Society, American Psychiatric Association, American Psychological Association, and American College of Obstetricians and Gynecologists.
The extensive clinical experience of Whitman-Walker’s providers is consistent with the peer-reviewed studies and other published evidence and the conclusions of leading medical and mental health professional associations. Time and again, surgical as well as hormone replacement and mental health therapies have proved highly successful for our patients. The following are a few representative observations from our providers:
- A 46-year old African-American transgender man, living in poverty, unemployed and with an unstable housing situation, began hormone therapy at WWH in 2008. He began living “full time” as male beginning in 2009, but was unable to access chest reconstructive surgery because of financial barriers. This was especially anxiety-provoking and traumatic for him because he often had to access male homeless shelters and was constantly fearful of being “found out” because of his “female anatomy.” This patient was finally (after 5 years living as male) able to obtain chest reconstructive surgery through a change in DC Medicaid policy. He received his chest surgery in late 2014. After his surgery, he completed an educational program and is now employed and saving money for his own apartment.
- A 41-year old transgender woman of color presented at WWH with history of depression and PTSD. She engaged at WWH for hormone therapy, mental health services and primary care to address other physical health concerns. She gained access to surgery after DC Medicaid began coverage of gender-affirming surgeries, and the changes significantly improved her sense of well-being and confidence. Her improved mental health has resulted in a need for significantly fewer individual therapy appointments.
- A 27-year old Caucasian transgender female presented with major depression, intermittent suicidal ideation and PTSD. She sought breast augmentation to help her with continued depressive symptoms associated with gender dysphoria. This client lived in perpetual fear of being “clocked as trans.” She did not gain adequate breast growth through hormone therapy alone. She was finally approved for breast augmentation through DC Medicaid and underwent surgery in the fall of 2015. She was subsequently able to leave her psychotherapy group after a substantial increase in her self-confidence due in large part to the surgical results.
- A 32-year old Caucasian transgender woman presented with significant depressive symptoms, suicidal ideation and active alcohol abuse. She Joined a WWH psychotherapy group to explore gender transition, and subsequently commenced hormone therapy. Her depressive symptoms greatly subsided, and her alcohol abuse is in remission. She has come out to her family and friends and at work, and has otherwise successfully transitioned. She was able to move out of her psychotherapy group and to become a peer support facilitator to provide help and support to other transgender individuals who are early stages of their transition.
- A young transgender man came to WWH in a desperate situation. Due to family rejection and harassment at his low-paying job, he was acutely suicidal and close to being hospitalized on several occasions. With the help of his WWH therapist, he realized that he did not want to die, but wanted to live as his true self. He began HRT, received psychotherapy, attended a psychotherapy group for trans-identified young adults, and will soon be undergoing top surgery. The availability of this surgery has been instrumental in helping him find the will to live and the ability to thrive.
Perhaps the most comprehensive view of the benefits of the full range of treatments, including gender-affirming surgeries, is provided by our Behavioral Health Specialist/Medical Liaison and Peer Support Program Supervisor, Stacey Karpen, who is responsible for conducting psychological assessments for WWH patients seeking hormone replacement therapy and gender-confirming surgery. As explained in her accompanying Statement, the need for and benefits of gender-affirming surgeries and other therapies have been substantiated by the overwhelming majority of more than 100 assessments that Ms. Karpen has conducted for our patients.
As providers of care to a large transgender community, we understand that each patient has their own unique desires and needs in order to live their authentic selves and that there is not a singular path for treating gender dysphoria. There are many essential elements in the clinical arsenal to alleviate gender dysphoria and facilitating access to these treatments via insurance coverage is critical to successful patient care. The Transgender Medicine Model NCD Working Group’s proposed Model NCD, prepared by noted experts in the field of transgender care, is comprehensive and reflects current evidence and clinical experience, and Whitman-Walker is pleased to endorse it.
We believe it is important to emphasize that the procedures that individual patients may need to fully treat their gender dysphoria, and affirm their true gender, include facial feminization, breast reconstruction, body contouring, tracheal shave and laser hair removal – as well as breast augmentation, mastectomy/chest masculinization, hysterectomy/oophorectomy, metoidioplasty, phalloplasty and vaginoplasty. When appropriately substantiated, consistent with WPATH standards, none of these procedures should be excluded from coverage by being inappropriately labeled as “cosmetic”. Many of our transgender patients need some or many of these procedures not only to fully eliminate the gender dysphoria from which they have suffered, but also to avoid the mis-gendering, discrimination, harassment, violence and stigma from others, which continue to threaten their mental and physical well-being.
Thank you for this opportunity to submit comments in this very important proceeding. Please contact us through Daniel Bruner, Senior Director of Policy,
firstname.lastname@example.org, (202) 939-7628, if we can provide any additional information.
Sarah Henn, MD, MPH
Senior Director of Health Care Operations
Randy Pumphrey, D.Min., LPC, BBC
Senior Director of Behavioral Health
Daniel Bruner, JD, MPP
Senior Director of Policy
Statement of Stacey Karpen, LPC, NCC, Whitman-Walker Health
National Coverage Analysis for Gender Dysphoria and Gender Reassignment Surgery, CAG-00446N
December 28, 2015
I am a licensed professional counselor with an M.A. in Clinical Mental Health Counseling currently employed by Whitman Walker Health (WWH) as a Behavioral Health Specialist/Medical Liaison and Peer Support Program Supervisor. I am also a doctoral candidate in Counseling at George Washington University, with expected completion of this program in January 2016. Outside of WWH, I have conducted several presentations on cultural competency related to serving the LGBTQ population and run a small private practice specializing in working with transgender youth and adults.
In my role as Behavioral Health Specialist and Medical Liaison at WWH, I conduct psychological assessments for patients seeking hormone replacement therapy (HRT) and gender confirming surgery. During these evaluations I obtain a full mental health, psychosocial and psychiatric history in an effort to ascertain whether or not a diagnosis of Gender Dysphoria (DSM-5, 302.85, and ICD 10, F64.1) is substantiated. This assessment is aligned with the requirements of the World Professional Association of Transgender Health Standards of Care. In addition, I provide short-term and long-term psychotherapy to transgender clients.
I can state with absolute confidence that gender affirming medical and mental health care saves lives. It is an understatement to say that treating individuals with Gender Dysphoria does not only improve their quality of life: in fact, it enables them to live a life they deem worth living. At least 80-85% of the clients that I assess for HRT or for surgery have a history of suicidal ideation, and many have one or multiple past suicide attempts. Nearly all of my clients have experienced emotional, physical or sexual assault as a result of their gender identity. Major Depression and Anxiety disorders as result of the psychosocial challenges of living as a transgender person are incredibly prevalent. I rarely meet a trans-identified person who has not experienced anxiety or depression related symptoms, often at acute and life-impairing levels.
My clients have suffered embarrassment, humiliation, violence, and sheer indifference to their humanity simply because their authentic gender identity is incongruent with their gender assigned at birth. Yet, despite their varied challenges, my patients’ capacity for resilience is astounding. Despite living in a society that discriminates against them, these individuals courageously strive to live authentically.
I have assisted probably over 100 clients to access HRT or surgery. Throughout this process I have had the honor of bearing witness to my patients’ transitions into confident individuals, comfortable in their own skin. Levels of depression, anxiety, suicidal ideation, and low self-esteem diminish dramatically. Oftentimes I have found that clients with psychiatric diagnoses are able to stabilize and reduce psychiatric medications once their body becomes more congruent with their authentic gender identity.
About one year ago I began working with a young man who came to me in a desperate situation. He was acutely suicidal and there were several occasions in which I was close to hospitalizing him. His family rejected his trans identity and withdrew all emotional and financial support. He was working at a low-wage job with a boss who constantly harassed him (and encouraged other staff members to harass him) because of his gender identity. I can recall an interaction we had during one of our sessions in which he discussed his thoughts of suicide. I remember saying to him something to the effect of, “I don’t think you are telling me that you don’t want to live. I think you are telling me that you are tired of living like this. In truth, I think you desperately want to live, you just want to live and be accepted as your true self.” With tears in his eyes, he nodded his head in agreement.
Over the course of one year, this client began HRT, received psychotherapy, attended a psychotherapy group for trans identified young adults, and will soon be undergoing top surgery. He quit his job and spoke to his employer about his manager’s abuse. He began to build a chosen family of LGBTQ identified and supportive individuals. Ultimately, he found the will to live and has done everything in his power to live authentically. Without HRT and without the hope of surgery, I truly don’t believe that this this young man would have found the strength to continue living.
Gender affirming medical interventions are life-saving interventions that should be accessible to all. Surgeries such as breast augmentation, mastectomy/chest masculinization, hysterectomy/oophorectomy, metoidioplasty, phalloplasty and vaginoplasty have significantly improved patients’ quality of life; however, additional interventions such as facial feminization, breast reconstruction, body contouring, tracheal shave and laser hair removal are equally as important in the process of diminishing the incongruence and impairment associated with Gender Dysphoria. These medical interventions, though sometimes considered “cosmetic,” are vitally important to a person who is transitioning. Many of my post-surgery clients have expressed concern that without these smaller procedures they remain unable to be recognized as their authentic gender identity. Without access to this care, mis-gendering, discrimination, harassment, violence and stigma remain a perpetual concern for transgender clients. These procedures should be part of comprehensive coverage for transgender patients. Providing only some services and not others will not fully reduce the detrimental effects of Gender Dysphoria and mental health concerns will continue to plague this community.
Thank you for your consideration of this statement.
Stacey Karpen, LPC, NCC
1 National Coverage Analysis (NCA) Tracking Sheet for Gender Dysphoria and Gender Reassignment Surgery (CAG-00446N), https://www.cms.gov/medicare-coverage-database/details/nca-tracking-sheet.aspx?NCAId=282.
Comments of Whitman-Walker Health in CAG-00446N