Hormonal Therapy & Surgery
Transgender individuals’ biological sex does not match their gender identity. Although statistics on the size of the transgender population vary, one 2011 study by the Williams Institute of the University of California at Los Angeles estimated that 700,000 transgender individuals are living in the U.S.3
Intersex individuals have “a discrepancy between the external genitals and internal genitals,” according to the National Institutes of Health, due to one of many chromosomal conditions, such as Klinefelter syndrome (XXY sex chromosomes), which affects about one in 650 newborn males, or the much rarer androgen insensitivity syndrome (genetically male, unable to respond to androgens, and often with female external sexual characteristics), which affects approximately two to five out of 100,000 genetically male people, among others.4,5
An increasing number of transgender men and women are undergoing hormone therapy as part of their transition process, which may also include surgery to remove sexual organs and alter the appearance or function of genitalia.6 According to the American Society of Plastic Surgeons’ 2016 Plastic Surgery Statistics Report, 3,256 gender affirmation surgeries were performed in the U.S. in 2016, a 19% increase over the previous year.7
Gender affirmation interventions may be clinically relevant to a rheumatologist making treatment decisions, but “the level of detail may differ according to the patient’s immediate problem,” says Dr. Lockshin. “Hormone status is important in the management of most autoimmune illnesses.”
Healthcare providers should ask new patients about any sexual organs they have, even if the patient plans to have surgery, due to potential drug interactions or risks, says Mr. Orndorff.
“I think it’s pertinent information to know, but that’s just like every other patient. This is where it can get dicey. If you still have female parts, you still have to see an OB/GYN,” he says. Mr. Orndorff also works as an emergency medical technician and says he often has to ask questions about a patient’s sex or gender. “We may think Viagra [sildefanil citrate] is made for men, but I have to ask female patients if they’re taking it, because if I give them nitroglycerine in an emergency, they could die. It’s medically necessary to ask questions.”
EMRs & Registries
At both Johns Hopkins and Hospital for Special Surgery, new patients are asked about their gender, sex at birth and preferred pronoun, and this information is entered in their charts in the electronic health record (EHR) system. However, it is unclear how rheumatologists use this information, if at all.
