In a world that is just beginning to make space for the open discussion of transgender individual’s life experiences, there’s still a huge gap in the conversation regarding healthcare. This population of people deserve a deeper investigation into their healthcare experiences, health disparities, and unique needs as patients.
Unfortunately, there is currently little data regarding this.
Dr. Alison Alpert at the University of Rochester is particularly interested in this issue within the field of cancer. She contends that if we do not know which cancer patients are transgender, we are unable to answer many of the questions which are most pressing concerning their wellbeing.
Why it Matters
There are many unknowns concerning transgender cancer patients. For instance, there has been little evaluation concerning hormone therapy and cancer treatment as simultaneous therapies. Likewise, it is unclear whether or not it is safe for transgender patients to undergo transition surgeries while they are being treated for cancer.
Dr. Alpert says that more data will –
“Help us build relationships with our patients, improve their care and outcomes, and, hopefully, be able to better counsel them about hormones and surgery.”
Unfortunately, none of this is possible if we don’t know which patients are transgender. However, this is clearly a very personal subject and it can be difficult to navigate, even in the context of medicine.
It is not routine for oncologists to collect information regarding their patient’s gender identity. It is also not included in cooperative group databases.
Dr. Alpert’s research truly highlights how much we don’t know about transgender cancer patients, and how much this knowledge, if developed, could improve patient care.
Dr. Alpert’s Research
Dr. Alpert first attempted to find the prevalence of transgender leukemia patients by analyzing patient data from five clinical trials held at the Southwest Oncology Group. These trials were for acute myeloid leukemia and myelodysplastic syndromes. She attempted to identify transgender participants by analyzing gender-karyotype mismatches. She identified 6 patients of the 1,747 with a gender-karyotype mismatch. However, she says that this number probably doesn’t even represent most of the transgender participants in the trials. Why? Because some patients probably do not have their gender identity noted correctly in their electronic medical record.
Due to this small sample size, Dr. Alpert and her team could not draw any noteworthy conclusions from their investigation. However, they are currently working on another analysis of lymphoma patients utilizing the gender-karyotype mismatch as well as surgical histories, medical histories, a search for the word “transgender” within patient charts, and other factors.
Dr. Alpert explains that gender identity needs to become part of the conversation in healthcare. She also suggests the inclusion of this data (of course with patient consent) in cooperative groups.
You can read more about Dr. Alpert’s research and her perspective on the issue here.