Rx for Change: Transgender Gender-Affirming Hormone Treatment

By Nancy Worcester and Mariamne Whatley

The NWHN’s leadership and advocacy on hormone safety has saved numerous lives by educating about hormonal contraceptives; advocating for the Women’s Health Initiative; promoting findings on menopause hormone therapy’s dangers; and critiquing testosterone’s marketing for industry-hyped “Low T.” With hormone safety and effectiveness still key issues, it’s ironic that we also must make hormones more available to improve trans people’s health—and possibly save their lives. As cisgender lesbian long-time feminist activists, we can fantasize that a more equitable society might mean everyone could choose to live in the gender(s) of their choice without body-changing procedures or hormones. BUT, our experiences and research tell us that the actual urgent message is that life-saving transgender health care needs to be available to more transgender people.

“Transgender issues have emerged from the periphery of the general conscious to a center-stage cultural, human rights, and medical topic,” and the sharp increase in the number of children, adolescents, and adults seeking gender-affirming medical care is expected to continue. Meeting this need is complicated by the fact that trans people experience life-threatening discrimination, abuse, poverty, and barriers to medical care—challenges that intensify as gender intersects with race and/or age. As a result, this population has above-average rates of anxiety, depression, substance abuse, and self-harm behaviors.

With multiple barriers to medical care, it’s common for transgender people to resort to finding their own hormone sources. The prevalence of medically unmonitored hormone use is as high as 60% among trans females in the U.S. and Canada. On-line hormone shopping is incredibly easy—but potentially harmful. One study found 96% of online drug-sellers exist outside regulations, often selling unapproved drugs; drugs containing the wrong active ingredient or wrong amount of the active ingredient; or drugs containing dangerous ingredients. Trans people who lack insurance may seek crowd-funding to support hormone purchases, which is generally unsuccessful for medical needs, and particularly so for transgender health care.

“Standards of Care” for serving transgender patients are available from The World Professional Association for Transgender Health and UCSF Center of Excellence for Transgender Health. All major U.S. medical associations recognize the medical necessity of transition-related care to improve transgender people’s physical and mental health, and advocate for insurance coverage for transgender people and research funding for associated medical issues.

Meanwhile, Trump/Pence-influenced policies are encouraging dangerous discrimination. Federal law bans health care discrimination against transgender people, but practitioners and patients alike are confused by Trump’s messages that individual providers can refuse treatment. Trump’s falsehoods about transgender care’s expenses have encouraged some insurance providers to deny this care. Yet, research clearly indicates there’s minimal or no cost increase from including gender-affirming care in a large group insurance plan; it’s actually cost-effective compared to the high financial and human costs of not providing treatment. Employers are increasingly offering trans-inclusive coverage in order to attract the best workers; no Fortune 500 company provided insurance for gender-transition in 2002, but 50% did by 2016.

In testimony advocating for Wisconsin’s Medicaid to cover transgender medical needs, Kathy Oriel, MD, emphasized the risks of not providing coverage: “I have personally cared for two persons who attempted self-castration. One had to be rushed to emergency services to stop her bleeding… I have also cared for scores of people who obtained hormones illicitly because they lacked insurance coverage. One transgender woman took such large doses of estrogen she suffered a life-threatening blood clot, which traveled to her lungs.”

More Study & Monitoring Needed

We need appropriate data collection and vigilant medical monitoring of risks for both “born with” (organs, genetic history) and transition body issues. For example, a large study demonstrated that trans women have increased risks for venous thromboembolism (VTE), highlighting the importance of monitoring for cardiovascular diseases.

Hormone treatment may also alter breast cancer risks in transgender people. A Dutch study found that trans women have an increased risk of breast cancer compared with cis men, and that trans men had a lower breast cancer risk than cis women, but a higher risk than cis men. We need increased awareness of the need to monitor and encourage those who are either not used to breast cancer screening (trans women) or who may think they have no more need post-mastectomy (trans men). Practitioners also need to address the complex issues of contraception, future fertility, disease prevention, and maintaining adequate bone mass.

Yet, significant gaps exist in research knowledge and clinical practice. Most published research on transgender issues consists of case reports, retrospective, or cross-sectional short-term studies that don’t always control for previous hormonal history or confounding baseline factors. High-quality research and data collection on transgender hormones requires designing research that respects the dangers of outing for this discriminated-against population, recognizes tensions between identity and behavior, and considers that placebo-controlled clinical trials of transgender hormones may not be ethically acceptable.

From Gender Dysphoria to Gender Euphoria

“Nothing about us, without us” was a key organizing slogan of early LGBTQ health activism, and it is policy-informing to hear what committed practitioners have learned by working with their transgender patients. While being transgender is (thankfully) no longer deemed a mental illness, transgender patients consider it problematic when they have to provide a letter from a mental health practitioner to qualify for medical care, or have their records coded for “gender dysphoria” or “gender identity disorder.” One trans person commented, “I’m not gender dysphoric, I’m gender euphoric!”

Standardized gender-affirming medical protocols (i.e., DSM, WPATH-SOC) can cause mistrust between trans people and clinicians, with practices being described as gate-keeping and pathologizing. Practitioners say they have to learn much about gender-affirming medicine on their own, through interactions with trans patients to figure out their own individual best practices of “work-arounds.” Such micro-level individual approach—vs. creating macro-level, policy changes—perpetuates our health care system’s inequities.

The most promising life-saving change is the shift to “informed consent” pathways to hormone initiation, enabling medical providers to initiate gender-affirming hormones without a prior assessment or referral from a mental health provider. The most radical changes are also the most basic: ensure trans people know they’re seen and heard; make health data forms, signage, and information appropriate for a range of genders; provide unisex restrooms; use preferred pronouns; and ensure gender-affirming medical education in all clinical and professional settings. As one provider says, “providing medical care for gender dysphoria, and seeing the ways my patients’ lives have improved, has been the most rewarding part of my medical career—and I delivered babies for 20 years.”

Sex Hormones 101

Sex hormones are often referred to as “male” (androgens, typically predominant in males) or “female” (estrogens, typically predominant in females), respectively. Both men and women produce and respond to both categories, and hormone levels overlap between sexes, with wide variations within each sex. The hormones are produced primarily in the gonads (testes, ovaries) and adrenal glands, and in fat and muscle tissue. As steroids, they’ve got similar structures with small differences between the molecules, allowing the body to convert one category into another.

In early developmental stages, embryos’ sexual and reproductive organs are undifferentiated and anatomical sex is indistinguishable. In a genetic female, bipotential gonads develop as ovaries; other undifferentiated structures develop as uterus, oviducts, vagina, clitoris, and labia. In genetic males, a signal from the Y-chromosome causes bipotential gonads to develop as testes, which produce androgens, causing male development (penis, scrotum, and vas deferens). Visible genitalia (vulva or penis/scrotum) are the basis for assigning a newborn infant’s sex.

In puberty, estrogens and androgens are actively produced and stimulate development of reproductive systems, sexual systems, and secondary sex characteristics (i.e., breast growth, body hair and fat distribution, skeletal changes). When pubertal changes begin, adolescents may be eligible for short-term, reversible puberty-blocking hormone treatments to temporarily suppress changes and give adolescents time to explore their gender identity without developing unwanted body changes that are difficult or impossible to reverse.

The terms “gender” and “sex” are often incorrectly used interchangeably. “Sex” refers to biological markers (i.e., gonads, chromosomes, anatomy, hormones); “gender” is the socially constructed attributes of what it means to be a girl/woman or boy/man in a particular society and time. Gender identity is the individual’s view of their own gender: “cisgender” when biological sex and gender identity align; “transgender” when the assigned sex doesn’t match their gender identity. A biological male may identify as a girl/woman (trans woman); a biological female as a boy/man (trans man). Individuals may not identify completely as one or the other, but view themselves along a gender continuum, with characteristics associated with both genders (non-binary, gender fluid, gender non-conforming). Some trans people seek gender-affirming medical treatment to masculinize or feminize their body, which often involves hormonal treatments to stimulate desired secondary sex characteristics and block undesired ones from developing further.

Testosterone (an androgen) is the principal treatment for biological females who desire masculinization (trans men). Effects include facial hair development and frontal hair recession; voice changes; redistribution of facial and body subcutaneous fat; increased muscle mass and body hair; change in sweat and odor patterns; increased libido, clitoral growth, vaginal dryness; and cessation of menses. The changes’ onset ranges from 1 month to 1 year, with maximum effects ranging from 1 to 5 years. As with puberty, changes occur at different times.

A dual hormonal approach (estrogens and anti-androgens) is used for biological males who desire feminization (trans women), to stimulate female secondary sex characteristics and suppress male secondary sex characteristics. Effects include breast development; redistribution of facial and body subcutaneous fat; reduction of muscle mass, body hair, and sperm count; changes in sweat and odor patterns; arrest of scalp hair loss; libido changes; reduction of erectile functions, sperm count, ejaculatory fluid, and testicular size. Changes’ onset range from 1 month to 1 year, and maximum effects range from 1 to 3 years.

References

[1] NWHN, The Pill Hearings, Washington, DC, NWHN. Retrieved June 3, 2019 from: https://www.nwhn.org/pill-hearings/

[1] NWHN, Women’s Health Initiative (WHI), Washington, DC, NWHN. Retrieved June3, 2019 from: https://www.nwhn.org/women’s-health-initiative/

[1] Massion C, Fugh-Berman A, “The Low-Down on Low-T (or Menopause for Men)  Women’s Health Activist, 2014; September/October 2014: 10-11. Retrieved on June 3, 2019 from: https://www.NWHN.org/low-low-T-menopause-men/

[1]  Massion C, Fugh-Berman A, “The Low-Down on Low-T (or Menopause for Men)  Women’s Health Activist, 2014; September/October 2014: 10-11. Retrieved on June 3, 2019 from: https://www.NWHN.org/low-low-T-menopause-men/

[1] Shumer DE, Nokoff NJ, Spack NP, “Advances in the Care of Transgender Children and Adolescents,”  ADV Pediatr 2016; August: 63(1): 79-102.

[1] Bockting W,”How Far Has Transgender Health Come Since Stonewall?” AJPH 2019; June (109) (6); 852-853.

[1] Dekker MJ, Wierckx K, Van Caenegem E, Klaver M, et al. “A European Network for the Investigation of Gender Incongruence: Endocrine Part,” J Sex Med 2016: Jun; 13(6): 994-9.

[1] Mueller SC, De Cuypere G, T’Sjoen G, “Transgender Research in the 21st Century: A Selective Critical Review from a Neurocognitive Perspective,” Am J Psychiatry; 2017; Dec 1; 174(12): 1155-1162.

[1] Barcelos CA, Budge SL, “Inequalities for Crowdfunding for Transgender Health Care,” Transgend Health 2019: Mar 6, 4(1); 81-88.

[1]  Bockting W,”How Far Has Transgender Health Come Since Stonewall?” AJPH 2019; June (109) (6); 852-853.

[1] Feldman J, Brown GR, Deutsch MB, Hembree W, et al, “Priorities for Transgender Medical and Health Care Research,” Curr Opin Endocrinol Diabetes Obes 2016:Apr; 23 (2) : 180-187.

[1] Mueller SC, De Cuypere G, T’Sjoen G, “Transgender Research in the 21st Century: A Selective Critical Review from a Neurocognitive Perspective,”  Am J Psychiatry; 2017; Dec 1; 174(12): 1155-1162.

[1] Shumer DE, Nokoff NJ, Spack NP, “Advances in the Care of Transgender Children and Adolescents,”  ADV Pediatr 2016; August: 63(1): 79-102.

[1] Beckwith N, Reisner SL, Zaslow S, et al, “Factors Associated with Gender-Affirming Surgery and Age of Hormone Therapy Initiation Among Transgender Adults,”  Transgend Health 2017; 2(1): 156-164.

[1] Branstetter G, “Sketchy Pharmacies Are Selling Hormones to Transgender People,” The Atlantic 2016; August 31. Retrieved on June 3, 2019 from: https://www.theatlantic.com/health/archive/2016/08/diy-hormon

[1] Branstetter G, “Sketchy Pharmacies Are Selling Hormones to Transgender People,” The Atlantic 2016; August 31. Retrieved on June 3, 2019 from: https://www.theatlantic.com/health/archive/2016/08/diy-hormon

[1] Kale S, “When Survival is a Popularity Contest: The Heartbreak of Crowdfunding Healthcare,” 2019, The Guardian, 2019; May 20. Retrieved on May 31, 2019 from: https://www.theguardian.com/lifeandstyle/2019/may/20/when-s

[1] Barcelos CA, Budge SL, “Inequalities for Crowdfunding for Transgender Health Care,” Transgend Health 2019: Mar 6, 4(1); 81-88.

[1] See: https://www.wpath.org/publications/soc and transhealth.ucsf.edu/protocols

[1] Baker KE, “The Future of Transgender Coverage,” N ENGL J Med 2017; May 11; 376:19: 1801-1804.

[1]  Lambda Legal,  “Professional Organization Statements Supporting Transgender People in Health Care,” Retrieved on May,, 2019 from: http://www.lambdalegal.org/sites/default/files/publications/

[1] [1]  Lambda Legal,  “Professional Organization Statements Supporting Transgender People in Health Care,” Retrieved on May, 2019 from: http://www.lambdalegal.org/sites/default/files/publications/

[1] Section 1557 of the Affordable Care Act; Baker KE, “The Future of Transgender Coverage,” N ENGL J Med 2017; May 11; 376:19: 1801-1804.

[1] Baker KE, “The Future of Transgender Coverage,” N ENGL J Med 2017; May 11; 376:19: 1801-1804.

[1] Vielmetti B, “Federal Judge Expands Medicaid Coverage of Transgender Surgery,” Milwaukee Journal Sentinel, April 24, 2019. Retrieved on June3, 2019 from:  https://www.jsonline.com/story/news/local/wisconsin/2019/04/2

[1] Baker KE, “The Future of Transgender Coverage,” N ENGL J Med 2017; May 11; 376:19: 1801-1804.

[1] Padula WV, Baker K, “Coverage for Gender Affirming Care: Making Health Insurance Work for Transgender Americans,” LGBT Health 2017; August; 4 (4): 244-247.

[1] Wilson AA, Green J, “Health Insurance Coverage Issues for Transgender People in the United States,” University of California San Francisco. Retrieved on June 2, 2019 from: http://transhealth.ucsf.edu/trans?page=guidelines-insurance

[1] Baker KE, “The Future of Transgender Coverage,” N ENGL J Med 2017; May 11; 376:19: 1801-1804.

[1] Oriel K, “Declaration of Kathy Oriel, MD, MS,” United States District Court, Western District of Wisconsin, Case No. 3:18-cv-0039-wmc. October 25, 2018.

[1] Getehun D, Nash R, Flanders WD, et all. “Cross-sex Hormones and Acute Cardiovascular Events in Transgender Persons: A Cohort Study,” Ann Intern Med 2018; 169 (4): 205-213.

[1] deBlok CJM, et al. “Breast Cancer Risk in Transgender People Receiving Hormone Treatment: Nationwide Cohort Study in the Netherlands,” BMJ 2019: 365. Retrieved on May 30, 2019 from: https://www.bmj.com/content/365/bmj.11652.long

[1] Deutsch MB,“Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Non-binary People, “University of California San Francisco. Retrieved on May 31, 2019 from: http://transhealth.ucsf.edu/trans?page=guidelines-home

[1]Beckwith N, Reisner SL, Zaslow S, et al, “Factors Associated with Gender-Affirming Surgery and Age of Hormone Therapy Initiation Among Transgender Adults,”  Transgend Health 2017; 2(1): 156-164.

[1] Feldman J, Brown GR, Deutsch MB, Hembree W, et al, “Priorities for Transgender Medical and Health Care Research,” Curr Opin Endocrinol Diabetes Obes 2016:Apr; 23 (2): 180-187.

[1] Getehun D, Nash R, Flanders WD, et all. “Cross-sex Hormones and Acute Cardiovascular Events in Transgender Persons: A Cohort Study,” Ann Intern Med 2018; 169 (4): 205-213.

[1] Tangpricha V, den Heijer M, “Oestrogen and Anti-Androgen Therapy for Transgender Women,” Lancet Diabetes Endocrinol 2017; Apr; 5 (4): 291-300.

[1] Bockting W,”How Far Has Transgender Health Come Since Stonewall?” AJPH 2019; June (109) (6); 852-853.

[1] Getehun D, Nash R, Flanders WD, et all. “Cross-sex Hormones and Acute Cardiovascular Events in Transgender Persons: A Cohort Study,” Ann Intern Med 2018; 169 (4): 205-213

[1] Stroumsa D, “The State of Transgender Health Care: Policy, Law, and Medical Frameworks,” Am J Public Health, 2014; March; 104 (3): e31-e38.

[1] Landers S, Kapadia F, “Fifty Years After Stonewall, the LGBTQ Health Movement Embodies Empowerment, Expertise, and Energy,” AJPH 2019;  vol 109 no. 6: 849-850.

[1] Interview with Rebecca Byers, MD, May, 2019.

[1] Interview with Kathy Oriel, MD, June 2019.

[1] MacKinnon KR, Ng SL, Grace D, et al, “Protocols as Curriculum? Learning Health Advocacy Skills by Working with Transgender Patients in the Context of Gender-Affirming Medicine,”  Adv Health Sci Educ Theory Pract 2019; May 28. Retrieved on May 30, 2019 from: https://www.ncbi.nlm.nih.gov/pubmed/31140013

[1] Interview with Kathy Oriel, MD, June 2019.

[1] Gridley SJ, “Youth and Caregiver Perspectives on Barriers to Gender-Affirming Health Care for Transgender Youth,” Society for Adolescent Health and Medicine.

Retrieved on June 2, 2019 from: https://www.jahonline.org/articleS1054-139X(16)00096-3/fulltext

[1] MacKinnon KR, Ng SL, Grace D, et al, “Protocols as Curriculum? Learning Health Advocacy Skills by Working with Transgender Patients in the Context of Gender-Affirming Medicine,” Adv Health Sci Educ Theory Pract 2019; May 28.

[1] Geyer A, “The Next Frontier Transgender Rights Take Center Stage,”  Isthmus.com, January 31- February 6, 2019, pp15-18.

[1] MacKinnon KR, Ng SL, Grace D, et al, “Protocols as Curriculum? Learning Health Advocacy Skills by Working with Transgender Patients in the Context of Gender-Affirming Medicine,”  Adv Health Sci Educ Theory Pract 2019; May 28.

[1] Interview with Rebecca Byers, MD, May, 2019.

[1] Interview with Kathy Oriel, MD, June 2019.

[1] Selix NW, Rowniak S, “Provision of Patient-Centered Transgender Care,” J Midwifery Women’s Health 2016; 61: 744-751.

[1] Oriel K, “Declaration of Kathy Oriel, MD, MS,” United States District Court, Western District of Wisconsin, Case No. 3:18-cv-0039-wmc. October 25, 2018.

[1] Shumer DE, Nokoff NJ, Spack NP, “Advances in the Care of Transgender Children and Adolescents,”  ADV Pediatr 2016; August: 63(1): 79-102.

[1] Deutsch MB,“Overview of Masculinizing Hormone Therapy, “University of California San Francisco.

Retrieved on May 31, 2019 from: http://transhealth.ucsf.edu/trans?page=guidelines-masculinizing

[1] World Professional Association for Transgender Health (WPATH), Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, WPATH 2012, p. 37. Retrieved May 2019 from: www.wpath.org

[1] Deutsch MB,“Overview of Feminizing Hormone Therapy, “University of California San Francisco.

Retrieved on May 31, 2019 from: http://transhealth.ucsf.edu/trans?page=guidelines-feminizing-th…

[1] World Professional Association for Transgender Health (WPATH), Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, WPATH 2012, p. 38. Retrieved May 2019 from: www.wpath.org