Equal access to health care and coverage for transgender patients is quickly becoming a reality. This week, the supermarket chain Kroger announced it will offer its roughly 400,000 employees full health coverage for trans-related surgeries and drug therapy in 2016. And with new Obamacare regulations prohibiting discrimination on the basis of gender identity, many cities and states are beginning to offer all-inclusive health care plans covering trans-related procedures.
Clinics, hospitals, and even medical schools are now scrambling to get up to speed. But a general lack of comprehensive research, academic instruction, and cultural competency leaves many health care professionals empty-handed. At times, the best information comes from trans patients themselves — a burden that can discourage them from returning for needed check-ups.
“It’s so hard to tell people what their experience will be in a doctor’s office, it can be all over the map,” said Harper Jean Tobin, the director of policy at the National Center for Transgender Equality (NCTE).
It’s critical providers and health care systems understand that any health care to a trans person is trans health care.
A 2011 NCTE study found 50 percent of trans patients had to educate their provider about basic trans health. Nineteen percent were simply refused medical care. Unless changes are made at the most basic levels, many advocates say trans health options may take much longer than expected to catch up to the national standard.
“There’s this perception that this is such a small part of the population, that it’s not a priority,” Tobin said. “But it’s a population that is especially threatened. And it’s growing.”
In September, the United States Department of Health and Human Services (HHS) announced new proposed regulations on the implementation of the Affordable Care Act (ACA) that would prohibit discrimination in health coverage on the basis of a person’s gender identity. This is the first time that federal law has prohibited sex discrimination in health care — but, like most nondiscrimination protections, it’s mostly at the regulatory level. Health facilities and insurance providers are only assessed for compliance once a complaint has been made against them.
So far, it’s becoming clear that this specific area of the ACA — Section 1557 — is particularly important for transgender patients. The first resolution agreement that the HHS Office for Civil Rights made under Section 1557, as well as the first court case to look at its protections in detail, were both related to the experiences of trans individuals.
One of the biggest barriers to trans coverage lies in the technical details. Current medical coding practices don’t include a way to differentiate a patient’s gender identity from the gender they were assigned at birth. This makes it difficult, for instance, for a trans man to be covered for a pap smear, or a trans woman to get a prostate exam.
“If the doctor’s diagnosis doesn’t match the procedure, the insurer will simply deny the coverage,” said Anand Kalra, health programs manager at the Transgender Law Center, which runs a hotline for medical providers to ask questions about trans care and coverage. This means most patients have to either research coverage options beforehand or go through a lengthy appeals process.
Some health care producers are wary of treating trans patients at all because they don’t want to wade into complicated insurance processes. But this could leave patients turned away for simply wanting basic, universal care.
“It’s critical providers and health care systems understand that any health care to a trans person is trans health care,” said Kelly Duchney, director of behavioral health services at Howard Brown Center in Chicago, which has a specific trans health program. “This includes a flu shot. This includes hormone treatments.”
But to understand these issues, along with the more trans-specific procedures, health providers need a stronger source of medical research to lean on. Still seen as a specialty area, there’s little funding going towards trans health research, and there’s no mandatory trans training in most health facilities. This doesn’t just affect the ability for current physicians to understand trans health needs — it also keeps future ones in the dark.
“Most medical universities address trans health as an elective,” said Kristen Eckstrand, co-founder of the LGBTI health program at Vanderbilt University School of Medicine. “They say they want students to understand ‘basic patients’ before ‘complicated patients’.”
Vanderbilt joins a handful of other universities that make trans health a core piece of its medical school curriculum and research. Aside from providing up-to-date medical findings, Eckstrand said these classes also cover comprehensive care issues, like learning what words trans patients may use to address their bodies or how to be sensitive to the emotional and physical trauma they may have experienced.
“We want our students be prepared to engage in long-term care — beyond just learning correct pronouns,” Eckstrand said.
As an example, she explained how some trans patients don’t want to be engaged with procedures that involve their genitals, especially if they represent the gender they no longer identify as.
“We have students play music or allow patients to have someone in the room with them for support. It can be traumatizing. But it can be overlooked,” Eckstrand said.
She said that the biggest barrier at the university level is getting university faculty up-to-date on modern trans health care. For most, it’s an optional piece of continuing education they can access through online accreditation services — if they have time. Eckstrand has been working with the Association of American Medical Colleges to create videos and trainings around the trans topics that faculty “should be talking about.”
Not all trans health providers think this type of universal education is critical, pointing out that’s where specialty clinics can play a role. Barbara Lewis, a physician’s assistant at D.C.’s LGBT health provider, Whitman-Walker, said she doesn’t believe trans health school be an integral part of every medical student’s education.
Providers need to be educated about specific areas of trans health, the burden shouldn’t be on the patient.
“I don’t think we should expect all practitioners to know how to treat trans health procedures,” Lewis said. “It’s definitely a specialty area and requires specific knowledge. A lot of primary care practitioners are not comfortable with it.”
Lewis said many of her patients come to Whitman-Walker because they don’t feel like their primary care doctor will understand their needs — even if it’s just for regular care. To keep her finger on the pulse of trans health care, Lewis said she attends a variety of conferences each year and relies on the internet for specific updates. And an increasing amount of health centers and university health services have asked Whitman-Walker staff to provide trainings on both medical and cultural competency.
Until federal and academic research catches up with trans health needs, case-by-case regulation — sparked by patient complaints — may be the fastest way to reform and educate both health providers and insurers. NCTE’s Tobin said he hopes the inertia from national trans advocates and nonprofits will get the ball rolling before then.
“We need a higher standard of understanding. Trans people have systematically be ignored and excluded for far too long. Providers need to be educated about specific areas of trans health, the burden shouldn’t be on the patient,” he said. “And I think given the health disparities in trans patients, it’s going to be well worth their time.”