By - June 06, 2023
Care for transgender and gender-expansive patients is a prominent issue in healthcare today. While health disparities, stigmas, and other barriers to care for these patient populations are works-in-progress with many hurdles to overcome, over the past decade there have been some strides in improving care for this community in healthcare generally,1 and at the laboratory level.
Laboratories, like much of the healthcare industry, have begun to experience a “global social awareness shift toward understanding that gender doesn’t exist on a binary and that you can’t always interpret sex-based results,” says Dina Greene, PhD, DABCC, an associate laboratory director with LetsGetChecked, and a clinical associate professor in the department of laboratory medicine and pathology at the University of Washington. “We know that sex and gender are different. I don’t think that a lot of people understood that ten years ago.”
That has translated into a growing (though still imperfect) movement within some laboratories, “to not cancel pregnancy tests or cervical cancer screening tests on men, or prostate screening tests if they’re ordered on women,” she says.
Additionally, Dr. Greene acknowledged that it was much more difficult a decade ago for transgender patients to get sexually transmitted infection (STI) screenings, particularly for people who were “stealth,” which she described as a person “who presents as their affirmed gender, and nobody would ever guess they were trans.”
Even still, the literature shows that transgender patients will avoid getting appropriate screenings, such as pap smears or prostate exams, if they don’t trust their physicians to be gender-affirming and open.
In much the same way that the HIV crisis of the 1980s changed pathology and medicine in general, strides in transgender healthcare may have a similar degree of change on how medicine and pathology are practiced today, according to Mahmoud A. Khalifa, MD, PhD, Donald F. Gleason Professor and director of Anatomic Pathology in the Department of Laboratory Medicine and Pathology at the University of Minnesota. “Transgender patients are a unique population that faces certain challenges that laboratories, and the entire healthcare profession, were not ready for.”
It is his goal that medicine starts to be “proactive” in serving transgender individuals, to improve health outcomes, rather than playing catch up.
As an anatomic pathologist, one area where he’s had a lot of experience is looking at tissues of individuals on gender-affirming hormones. “Ten or fifteen years ago, we didn’t understand the changes we were seeing if an individual had been receiving gender affirming hormones. So, I took it upon myself to start a campaign, raising awareness among pathologists as to what to expect when you look at the tissues of a person who has been taking [gender-affirming] sex hormones for five or ten years,” he explains.
Prior to that, Dr. Khalifa says there were only “theoretical” discussions in textbooks about, for example, what a testicle would look like if the person received estrogen. “Only now have we started writing new chapters in textbooks, about what is no longer an experimental thing; it is happening.”
Correcting mistaken assumptions in healthcare is important, such as one of his own, like that transmen were unlikely to get cervical or ovarian cancer, for example. “When I wrote my first paper on the topic, I thought that transgender males would not practice sex as females and were unlikely to have cervical dysplasia,” Dr. Khalifa says. “Boy, was I wrong. The more transgender individuals I saw, the more I started to see uterine and cervical dysplasia.”
This understanding moved him to advise physicians to counsel their transgender individuals to be up to date on important screenings such as pap smears and prostate exams, regardless of gender.
Another issue that laboratories face that may be changing soon, is the lack of standardization of “normal” laboratory values for transgender patients. According to a 2016 article in Laboratory Medicine,2 “The interpretation of laboratory data in transgender patients is especially complicated for laboratory tests that have sex-specific reference ranges, such as tests of liver enzyme, creatinine, and hematocrit levels.”
Dr. Greene explains that gender-affirming hormones can confuse some clinicians and pathologists if they’re relying upon data for cisgender people. “So, for example, if a transgender man has a testosterone concentration of 630 two days after his normal testosterone injected dose, many providers will think that’s too high, even though it’s the low mid-range of the adult cisgender male reference interval.” This can then lead to a provider recommending dramatic changes to the patient’s hormone intake that aren’t necessary.
Moving to change this, Dr. Greene and other colleagues formed a working group whose goal is to make guidelines on reference intervals for people taking gender-affirming hormones.
“The goal is to have evidence-based, data-referenced intervals for sex hormones for transgender people, and guidelines that say ‘use this range, not this other unrealistic range’ that you had on the old guidelines. This will stop [physicians] from keeping people in these unrealistic and very narrow ranges for sex hormones that are nowhere near what their counterparts are exposed to.”
She anticipates having a document within a year, and publication within a year from that. Though adoption may be slow, she is hopeful that it will make a change.
Additionally, she says that physicians and pathologists are realizing that some tests are no longer necessary for transgender folks on gender-affirming hormones, such as liver enzymes or chromosomal tests.
“We’re getting rid of all these unnecessary tests. Just affirm gender,” she says.
Improving care for transgender individuals has undergone a slow shift at the level of the terminology that laboratory professionals and pathologists use when talking to their patients, or labeling laboratory specimens. According to a 2019 report in the journal Transgender Health,3 gendered language in pathology can be a barrier to care for transgender patients, so the authors have created suggested terminology for anatomical pathology reporting for gender-affirming surgery and reporting.
Some examples are: replacing old language of “male testicular tissue” in an orchiectomy procedure with “benign testicular tissue or parenchyma.” Instead of “female breast tissue” in a mastectomy, they recommend “benign breast tissue,” or “benign mammary tissue.”
In anatomical pathology reporting, they recommend avoiding such phrases as “gender reassignment” or “sex reassignment” and instead describe the specific procedure, such as “penectomy,” “hysterectomy” or “oophorectomy.”
These distinctions are not just about being sensitive. According to a 2022 study in Genetics in Medicine,4 “Discrepancies between and incorrect assumptions about genetic sex and gender identity could compromise patient care, e.g., because lab tests are misinterpreted, or insurers deny reimbursements for procedures based on faulty information.”
Dr. Khalifa sums it up, “If we continue to talk to pathologists to raise awareness, we are increasing patient safety for this population.”
There’s still a significant amount of change that needs to happen. For example, laboratory information systems and EMRs don’t all allow for capture of patient’s affirmed gender identity data and preferred names, and these systems don’t always interface, because the software is different, Dr. Greene says. However, these systems are capable of doing so, and hopefully, future iterations will heed the World Professional Association for Transgender Health (WUPATH)5 executive committee, which made a recommendation in 2011 that EMRs be designed to capture assigned sex at birth, gender identity, preferred name, and preferred pronoun.
The health of transgender patients depends upon changes like these.
1. Thiesen, Graham J. and Amarillo, Ina E. “Creating Affirmative and Inclusive Practices When Providing Genetic and Genomic Diagnostic and Research Services to Gender-Expansive and Transgender Patients.” The Journal of Applied Laboratory Medicine, Volume 6, Issue 1, January 2021. Pages 142–154, https://doi.org/10.1093/jalm/jfaa165.
2. Gupta, Sarika, Imborek, Katherine L., Krasowski, Matthew D.
“Challenges in Transgender Healthcare: The Pathology Perspective.” Laboratory Medicine. 2016. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4985769/pdf/lmw020.pdf
3. Ahmad, Tehmina, Lafreniere Anthea, and Grynspan, David. “Incorporating Transition-Affirming Language into Anatomical Pathology Reporting for Gender Affirmation Surgery.” Transgender Health. Volume 4.1, 2019. https://www.liebertpub.com/doi/epdf/10.1089/trgh.2019.0026
4. Cho, Mildred K, Lasio, Maria Laura, Amarillo, Ina, Mintz, Kevin Todd, Bennett, Robin L., Brothers, Kyle B. “Words matter: The language of difference in human genetics.” Genetics in Medicine. December 16, 2022. https://www.gimjournal.org/article/S1098-3600(22)01027-9/fulltext
5. Patel, Khushbu, Lyon, Martha E, Luu, Hung S. “Providing Inclusive Care for Transgender Patients: Capturing Sex and Gender in the Electronic Medical Record.” The Journal of Applied Laboratory Medicine, Volume 6, Issue 1, January 2021, Pages 210–218, https://doi.org/10.1093/jalm/jfaa214