Transgender care, in and beyond the lab

Dr. Winston-McPherson says she’s encouraged by how her colleagues are responding to attempts to address care gaps for transgender patients. But even as care improves, she says, “There are still some really big institutional challenges that make it hard at an individual level.”

It’s one thing to develop reference intervals for a healthy adult transgender population who are on gender-affirming hormone therapy. But putting those intervals into the system is a different matter. As Dr. Winston-McPherson notes: “One big limitation involves the options we have available in our electronic medical records and our laboratory information systems.”

It’s reasonable, she says, for providers to be aware of the patient’s sex assigned at birth, gender identity, preferred name, pronouns, and relevant organs. All of which, she says, should be available across the health care system to facilitate positive interactions and guide appropriate testing and screening. “But that information is not always collected uniformly, so that’s another area where we need to make progress.”

“The informatics piece is hard,” Dr. Krasowski agrees. Although he reports seeing improvements in EHRs as major vendors have started to incorporate fields that allow patients to include their gender identity and related information, there are “so many choices in how people can identify themselves. It becomes extremely complicated to sift that out,” he says.

This touches on the fact that there’s tremendous diversity within the transgender community, Dr. Winston-McPherson says. “Not everyone who’s transgender is on hormone therapy or has had surgical treatment. There are different ways that folks need to have their gender affirmed.”

For those who are on hormone therapy, Dr. Krasowski adds, “there’s not a very direct sort of marker that says, This patient’s taking hormones.” Moreover, some may start and stop or otherwise adjust their dose. “If you’re looking for some change in pathology or laboratory testing related to hormone therapy, it’s not so easy to link that up in the electronic medical record.”

“If you were to at least identify a group of patients,” he muses, “do you put a comment on lab tests? Do you somehow, for some things, make evident an informative comment related to reference ranges? That’s sort of what the capability is now.”

There are other logistical problems related to EHRs, Dr. Krasowski says. Some systems allow patients to select preferred name, gender identity, and sex assigned at birth in their patient portal, but depending on state laws, legal documentation can be required to officially change legal sex in the medical record. That can present problems in phlebotomy, where patients may be called by a legal name, and not a preferred name, or are misgendered using legal sex. Or, in cases where patients can identify as transgender or nonbinary, some may choose not to disclose or to mark “other” or “unknown” for a variety of reasons, including fear of discrimination.

All of which makes it complicated for labs. “If you wanted to have rules that try to assign test ranges based on those categories, I don’t think you have enough information,” Dr. Krasowski says.

And in cases where a patient has changed their legal sex, and provided no other information, “you would have no idea about their sex assigned at birth. That can present problems with certain tests, like Pap tests or PSA—some of those have no reference range in the opposite gender. Because it’s usually not ordered.”

He speaks admiringly of providers who see a large number of transgender patients in their practice. “Their clinical notes are very templated. They’re so easy to read because they include all the pertinent information.” It can be harder when patients access other parts of the health care system where physicians are less familiar with transgender care, although things have gotten better as those who practice in LGBTQ clinics do grand rounds and continuing education in other departments, he says.

It’s a field in flux, medically as well as politically. As the medical community learns more, many are taking stock of how transgender patients receive ordinary care in a less-than-ordinary social context.

The two aren’t separate, says Dr. Winston-McPherson, who notes her own longstanding interests in health disparities. She started down the path of laboratory medicine, and clinical chemistry in particular, and then Dr. Greene became a mentor, drawing her attention to inequities related to the transgender population. It quickly became clear to Dr. Winston-McPherson that labs were critical to creating change. “It’s a space in medicine, particularly laboratory medicine and clinical chemistry, where there’s a lot we can provide.”

Dr. Greene says her research is inextricably bound with social issues. With cardiac medicine, she says, treatment is complicated by how feminine or masculine a patient appears, regardless of whether the patient is cisgender or transgender. “It influences the type of care you receive and what tests are ordered.” She was scheduled to present at this year’s AACC annual meeting (along with Amy Saenger, PhD), in a session titled “At the Heart of Sex and Gender.”

The biggest change she’s seen in recent years, Dr. Greene says, “is the heated political nature around providing gender-affirming care.” When she first began working in the field of transgender health care, Dr. Greene recalls being excited (“Although the work still excites me,” she says), perceiving that her work and that of other specialists was bringing more awareness to normalize gender and diversity. “And it did—for a minute. And then it didn’t,” she says ruefully.

“Now we’re seeing kind of a backlash, where there’s deliberate targeting of transgender folks,” she says, referring to states that have passed or are considering laws restricting access to gender-affirming care for minors, with penalties, including fines and prison terms, for health care providers who prescribe or encourage guideline-supported treatment.

While this has not affected her work specifically—she notes the blue nature of Washington state—“It’s important to think about the implications for medicine in general,” she says. She compares it to state laws that limit access to abortion and related reproductive health care. “This is nonphysicians making medical decisions. That’s scary.” (See CAP statement on Dobbs v. Jackson Women’s Health ruling: https://capatholo.gy/3ajjqOz.)

Drawing out the comparison further, she notes that as some states limit abortion-related medical care, some labs have wondered about the implications of performing maternal serum screening tests. If abnormal results were used by a patient to justify an illegal abortion, would the lab be criminally liable?

In trying to normalize the conversation around transgender health care, Dr. Greene, like Dr. Winston-McPherson, also draws on the norms of science and medicine. Information is currency, she says. Gender and gender development are not widely understood—the more research, the more science, the better. In the meantime, she says, “What we do know is that when it develops, and when somebody has identified their gender, the best thing we can do for them, from a health care perspective, is affirm their gender.”

Labs have long fought for a seat at the table, to be seen as providing services crucial to patient care. As discussions about inequities and disparities in health care have opened up more widely in recent years, do labs have a role in those discussions as well?

Certainly, says Dr. Winston-McPherson. “I have a lot to say about that. The existence of health care disparities and marginalization is the water that we drink. I think we get complacent and say to ourselves, Oh, there’s nothing that can be done about this, there’s nothing to be done about that. These problems just exist—without recognizing that the structures and the system we have in place contribute to the marginalization and the health disparities we see.

“Everybody has a role to play in addressing issues of inequity,” she continues. “It takes a radical type of thinking to say, This is not OK. We can do something. We can change this.” Closing one’s eyes and saying nothing can be done “is not the right approach,” she adds.

Laboratories can start by seeing the resources they already have. “We sit on a mountain of data,” she says. “We have a macro perspective on the utilization of laboratory testing.” If labs think about clinical testing as a resource that can be used and allocated, she says, “We are in a unique position to be able to investigate who has access to that resource and who does not.”

She sees no point in providers trying to extract themselves from the context in which they practice. “You really can’t,” she says. “There’s a reason there’s a term called ‘health policy.’ There’s a reason there’s a term, ‘social determinants of health.’ We know that social issues impact people’s health.”

While it’s not fully clear yet how labs can intervene, “We need to step back and engage in some radical thinking” to address health care inequities, she says. “We need to get away from this idea that health disparities just exist and nothing can be done about them. There is a role for us to play. We need to make a commitment to figuring out how we lend our services to this area.” (See “Tackling inequity in health care.”)

Like Dr. Winston-McPherson, Dr. Greene situates laboratory medicine within the social environment in which testing is performed. “That’s why I love doing this work,” she says. “It allows me to be at the interface of the social and the biological. We can’t separate those things.”

She ends on a blunt note. For all the medical research that’s needed, and for all that the EHR needs to be brought up to speed, social acceptance of the transgender patient population is “the number one thing that needs to happen.” Patients need to be able to access treatment; not having social acceptance is, in her view, “the biggest comorbidity” in this patient population.

Dr. Krasowski offers an equally sobering assessment.

“To me the patient population that’s really vulnerable right now is the adolescent transgender population, although the adult transgender population also faces significant challenges,” he says. “In many states Medicaid is not going to cover any gender-affirming treatment for minors, and there may even be restrictions on treatment of minors that extends to private insurers. For adults, Medicaid in some states may not cover some gender-affirming therapy, especially surgeries. This leads to disparity of transgender care between states and sometimes between Medicaid and private insurance in the same state,” he says. Labs cannot be aloof from these conversations. “We’re talking about a different standard of care.

“The issue of puberty blockers has gotten controversial, whereas that wouldn’t have been in the public eye before,” he continues. “I do think in the general public there’s a misconception that treatment in adolescents is far more common than it is.” If anything, he says, lack of parental support is more the norm. “And it’s a difficult journey even if you do have a supportive family.” Laws aimed at punishing those who provide and support treatment “don’t make it any easier.”

“My view is, whatever we can do in pathology to make it a little bit easier would be awesome,” he says.

Karen Titus is CAP TODAY contributing editor and co-managing editor.