Transgender Health and the Well-Woman Visit
Author: Malka Main
The Transgender Health Care Toolkit, available for free on the Cedar River Clinics website, is a comprehensive guide for health care providers to add transgender care to their services. This resource is intended to address transgender health disparities that stem, in part, from the long-standing exclusion from medical education and public health programs.
|Simon Adriane Ellis, Certified Nurse Midwife and co-creator of the Transgender Health Care Toolkit|
Being transgender does not preclude the desire, or ability, to conceive, carry and bear children.1,2 As the women’s health care and preconception health movement grows stronger, transgender health care is emerging from obscurity, slowly gaining national visibility. In 2011, the American College of Obstetrics & Gynecology published an opinion paper on welcoming transgender patients and just two months ago the federal Health and Human Services Department clarified that transgender people are included in the anti-discrimination rules under the Affordable Care Act.
Healthy People 2020 includes two distinct goals for transgender healthcare: increase the research and data on transgender health (there is a particular dearth of data on transgender men) and integrate transgender health topics into all medical school curricula. The lack of required transgender health education in medical and nursing schools leaves providers, who might otherwise welcome transgender patients, unprepared and unsupported. Until the country achieves these goals, two Seattle-area midwives have developed a blueprint for high-quality compassionate transgender health care.
THE TRANSGENDER HEALTH CARE TOOLKIT
In March 2016, Cedar River Clinics in Washington State released the Transgender Health Care Toolkit, a peer-reviewed collection of clinical protocols, letter templates, consent forms, and staff and clinician training resources.
“It has all the pieces needed to begin offering transgender health care services,” said Simon Adriane Ellis, a certified nurse midwife and self-identified trans/genderqueer person who managed the creation of the Toolkit. Ellis worked with Clare Sherley, who was then a University of Washington midwifery student and now practices with Overlake Obstetrician & Gynecologists in Bellevue, Washington. As a student, Sherley wanted to focus her doctoral capstone project on transgender health, a topic that was underrepresented in her doctoral nursing curriculum. Both midwives wanted to include an in-depth toolkit for providers, with information ranging from introductory modules to detailed guidelines.
The Transgender Health Care Toolkit is a living, online resource, shaped by user feedback, and open to submissions from outside experts. Cedar River Clinics plans to publicly announce the Toolkit later this summer, but more than 200 providers have already accessed it including doctors, nurses, medical students, clinic administrators, and mental health care professionals from the U.S., Canada, England and Sweden.
The Toolkit’s introductory module, Trans* 101, reviews the importance of transgender health care, how to create a welcoming environment, and the terminology and basic concepts of gender identity. While natal sex is assigned to a person at birth based on observable genitalia, gender is a social construct that goes beyond the binary distinction of male and female. (It can even be fluid throughout a person’s lifetime.) The terminology contrasts transgender, one whose birth-assigned gender does not align with their identity, with cisgender, one who comfortably identifies with their birth-assigned gender.
The Toolkit includes common terms transgender people use to describe their own identities. People assigned male at birth (AMAB) might refer to themselves as MTF (Male to Female), transwoman, transfeminine, or woman (no modifiers). People assigned female at birth (AFAB) might call themselves FTM (Female to Male), transman, transmasculine, or simply man (no modifiers).
Throughout the Toolkit, Ellis and Sherley use the word trans* rather than transgender. While both are umbrella terms, transgender is also a specific reference to someone with a binary gender identity opposite to the one assigned at birth. The asterisk in the word trans* represents all individuals who do not fully identify with their birth-assigned gender: this could be genderqueer, third gender, two-spirit, or agender, to name just a few.
In Trans* 101, Toolkit users learn a few simple ways to create a welcoming clinic environment: update intake forms to reflect gender options beyond “male” and “female” and add a question about preferred pronouns. Within the trans* community there are a variety of personal pronouns used in addition to he and she, such as they (singular), per, ze/zir, s/he or hir. Staff should refer to patients by their preferred pronouns and if a mistake is made, the best thing to do is apologize and move on.
WHY IS TRANS* HEALTH CARE SO IMPORTANT?
“I think when most people think of a transgender person, they think of a post-operative male to female person, I think transmasculine folks [people assigned female at birth]have been largely invisible for a long time,” said Sherley. “Maybe because they aren’t as frightening to straight men. And it is straight men who are in charge of media and research.”
But, added Sherley, it could also be health risks. Trans* women are more represented in HIV research than are trans* men because they are at greater risk.3,4 “Trans women are more vulnerable to discrimination, assault and murder than trans men,” explained Ellis. “Most anti-trans legislation disproportionately targets trans women generally and trans women of color specifically. So while transmasculine people are more often left out of research, in most cases we are less vulnerable going about our daily lives.”
Additional research is important. The more research there is, the more knowledge there is and this could lead to better health care for trans* men. But research also performs another purpose: to build awareness within the research community and larger public. For instance, when Sherley had to find a faculty member to join her doctoral project committee and help guide her in the development of the Toolkit, she said it was tricky to explain the project.
“People just didn’t understand why it was so important.” It was not until she showed them data from a survey of more 6,000 trans* people living in the U.S. that they understood. “It was something tangible for the faculty to see – these are the percentage of trans patients that have been harmed by health care providers; this is the increased risk for suicide among those patients,” Sherley explained. “[The data] helped me make a clear argument for why this was important and why it’s about saving lives.”
The survey data that helped Sherley make her point came from a report of the National Center for Transgender Equality and National Gay and Lesbian Task Force. It is a narrative of quantified horror that reveals astounding rates of joblessness, homelessness, disease, isolation and abuse all associated with the social implications of being trans*.
The phenomena of health care avoidance in the trans* community is an experience reflected in the survey data and discussed in the Toolkit materials. Nineteen percent of survey respondents said they had been denied health care and 28% said they delayed their care because of past discrimination by medical providers.3 “Every trans or gender non-conforming person has heard that story of the EMT that stopped treatment as soon as they understood the gender identity of the person they were treating,” said Ellis. “Everybody knows these stories…the community holds the weight of that. You just know it and you fear it, even if it hasn’t happened to you yet.”
TRANS* MEN SHOULD BE INCLUDED IN THE PRECONCEPTION CONVERSATION
Trans* men and other patients assigned female at birth (AFAB), are more likely than trans* women or cisgender women to delay preventive health care.3,5 This puts them at increased risk for ovarian, uterine, and cervical cancers.4
The pelvic exam portion of the annual visit is particularly problematic for trans* patients assigned female at birth (AFAB). The exam experience can intensify feelings of disconnection between self-perception and the physical self.6 If a patient is on hormone therapy there is an added dimension of bodily pain. The combination of testosterone with emotional and physical distress often compromises the amount of cervical cells necessary to screen for cancer and may require repeat pap tests.7
Family Planning and the Trans* Patient
The Toolkit’s preventive care model recommends providers discuss family planning with their trans* patients. The rise in public health campaigns focused on women’s health is a response, in part, to the national need to raise the reproductive awareness that a healthy body makes a healthy pregnancy makes a healthy baby. But these campaigns market their messages to cisgender women, leaving out the trans* portion of the population who also become pregnant and have babies. “There is, universally, a lack of excellent preconception counseling for everybody,” Ellis said. “So as women’s health care providers and trans health care providers we need to bring trans people and gender non-conforming people into that.”
Two years ago, Ellis conducted research into the conception, pregnancy and childbirth experiences of male and gender variant gestational parents. “Loneliness was the overarching theme that permeated participants’ experiences, social interactions, and emotional responses during every stage of achieving biologic parenthood,” he wrote.2 While pregnancy was a deliberate choice for all participants in Ellis’ study, none were asked about reproductive goals by their providers. “That was most surprising to me,” said Ellis. “Because that question wasn’t asked, people felt so alone when they were struggling to conceive. They were outside of the medical system that could have provided them support. It’s such a simple thing, but not being invited to discuss [pregnancy intention] led to such isolation…that was really moving to me.”
The Center for Disease Control’s (CDC) recently released guidelines for treating sexually transmitted infections briefly mentions “transgender men and women” under “Special Populations.” But trans* patients are not addressed in the actual guidelines or the screening recommendations. “You have to get really creative when you are trying to figure out how to apply it to your patients,” Ellis explained. “That shouldn’t be the burden of the individual providers.”
Sherley said that the national organizations need to be the trendsetters. “We can try to go from the ground floor up, but it works a lot faster, for example, when people are copying and pasting policies and statements made by the CDC or other national organizations,” Sherley explained. “If they have inclusive language already in there, it makes it easier to have that trickle down.”
LOOK TO THE FUTURE: EDUCATION
Guidelines and support from federal-level health agencies, while important, are not enough. About 50% of trans* people reported that they had to teach providers how to treat their own trans* bodies.3 “People will come in with the flu or a broken arm or whatever and providers will say ‘Well, I don’t know how to take care of you, I’m not trained,’” explained Ellis. “And it’s like…yes, you are, you know physiology, apply your knowledge.”
Ellis said this lack of knowledge is not just a failure of individual providers but the entire education system. A recent study of 176 medical schools reported that only two-thirds offered LGBT-focused coursework. These courses ranged from 3 to 8 hours of the entire curriculum and all were elective.8 “It should just be part of the required curriculum. Every class [on primary care and preventive care] should include trans* people because…we exist, you know?” Ellis said.
Beginning this fall, all of that changes. At least for first and second year medical students in Kentucky at the University Of Louisville (UofL) School Of Medicine. It is the first school in the nation to pilot the trans*-inclusive curriculum guidelines from the Association of American Medical Colleges (AAMC). These are formal, comprehensive standards to help medical schools train providers in the health care needs of LGBT, gender non-conforming individuals as well as those born with differences of sex development. The school has integrated trans* health content into 50 hours of required curriculum. Director of UofL’s LGBT Center, Stacie Steinbock, said the team managing the integration made sure that trans* people were included in the development of the educational materials. “When [we] looked at the data in health disparities for the LGBTQ population, the transgender community was experiencing far and away the worst of the health care related health disparities,” Steinbock explained. The school plans to fully extend the new curriculum into the third and fourth years of medical school in 2017.
In the meantime, Ellis offers this three-point lesson in providing knowledgeable and compassionate preventive health care to trans* patients:
1) Trans* bodies are human bodies - apply your knowledge of physiology.
2) If they have [an organ] - screen it and if they use [that organ] - test it.
3) Ask if, how, and when they want kids.
- Light A, Obedin-Maliver J, Sevelius J, Kerns J. Transgender Men Who Experience Pregnancy After Female-to-Male Gender Transitioning. Obstetrics and Gynecology.2014;124(6):1120-1127. doi: 10.1097/AOG.0000000000000540.↩
- Ellis SA, Wojnar DM, Pettinato M. Conception, pregnancy, and birth experiences of male and gender variant gestational parents: it's how we could have a family. Journal of Midwifery and Women’s Health. 2015;60(1):62-9. doi: 10.1111/jmwh.12213.2015. ↩
- Grant JM, Mottet LA, Tanis J, Harrison J, Herman J, Keisling M. Injustice at every turn: a report of the National Transgender Discrimination Survey [Internet]. National Center for Transgender Equality and National Gay and Lesbian Task Force; 2011. Accessed July 2016 ↩
- World Health Organization. Policy Brief: Transgender People and HIV. July 2015. Accessed July 2016↩
- Peitzmeier S, Khullar K, Reisner S, Potter J. Pap Test Use is Lower Among Female-to-Male Patients than Non-Transgender women. American Journal of Preventive Medicine. 2014;47(6):808-12. doi: 10.1016/j.amepre.2014.07.031↩
- Dutton L, Koenig K, Fennie K. Gynecologic Care of Female-to-Male Transgender Men. Journal of Midwifery Women’s Health. 2008;53(4):331-7. doi: 10.1016/j.jmwh.2008.02.003. ↩
- Peitzmeier S, Khullar K, Reisner S, Harigopal P, Potter J. Female-to-Male Patients Have High Prevalence of Unsatisfactory Paps Compared to Non-Transgender Females: Implications for Cervical Cancer Screening. Journal of General Internal Medicine. 2014;29(5):778-84. doi: 10.1007/s11606-013-2753-1. ↩
- Obedin-Maliver J, Goldsmith E, Stewart L, et al. Lesbian, Gay, Bisexual, and Transgender–Related Content in Undergraduate Medical Education. The Journal of the American Medical Association. 2011;306(9):971-7. doi: 10.1001/jama.2011.1255. ↩