As Republicans look to partially or wholly dismantle the Affordable Care Act (ACA), 22 million Americans risk losing this vital safety net. Among the most vulnerable populations are transgender and gender-nonconforming people.
The agony in the community at the possibility of an ACA repeal is palpable. At Oregon Health and Science University, where we practice, we’ve noticed an increase in call volume and clinic visits regarding gender transition treatment. This suggests people from the transgender community are flocking to urban areas that are socially accepting and medically ready to receive them—particularly as they face the prospect of losing their hard-won rights to medical care.
Transgender people have long faced enormous challenges when it comes to getting proper health care. In 2010, a national survey revealed that 19% percent had been refused care by health care providers because of their gender identity, and 28% had been verbally harassed in a medical setting. Many avoided medical care entirely: 28% postponed or avoided medical treatment when they were sick or injured. While the majority wanted at least some type of gender transition surgery, few had undergone it. Most strikingly, 41% of respondents had attempted suicide, compared with 1.6% in the general population.
The ACA, signed into law in 2010, took this health crisis seriously. It set a general tone for the respectful treatment of transgender and gender-nonconforming patients. It prohibited classifying gender identity as a pre-existing condition and stated that insurance companies are not allowed to discriminate based on gender identity or sex stereotyping, requiring that “a covered entity apply the same neutral, nondiscriminatory criteria that it uses for other conditions when the coverage determination is related to gender transition.” For example, insurers who cover mental health conditions cannot, under the ACA, exclude coverage of treatment for gender dysphoria, a DSM-5 diagnosis.
The ACA also opened the door for insurance companies to pay for gender reassignment operations, as one could argue that a phalloplasty (creation of a penis) in a transgender male might be covered in the same manner as a reconstructive phalloplasty would be for a cisgender man with cancer.
“The ACA opened up gender-affirming health care for so many,” says Janson Wu, executive director of GLBTQ Legal Advocates & Defenders (GLAD), “especially as the transgender community is disproportionately uninsured due to employment discrimination.”
The ACA’s discrimination protections provided the impetus to seek a more evidence-based approach to gender transition services. At the time the ACA was passed, the Department of Health and Human Services (DHHS) had maintained a 30-year ban on coverage of gender transition surgical services. Under the new law, a transgender woman and army veteran named Denee Mallon decided to file a civil rights suit against the DHHS for denying her sex reassignment surgery. In 2014, the Appeals Board of the DHHS determined that “expert medical testimony and studies published” in the years since the ban was first established demonstrated that the coverage exclusion was no longer valid. Lifting the ban led to subsequent challenges to state regulations of coverage of health care services for transgender and gender non-conforming patients.
In practice, neither employers nor insurance companies have fought the expansion of services to this population. One-third of Fortune 500 companies now offer trans-inclusive health benefits packages, and overall, there has been a 10-fold increase in prevalence of inclusive health packages since the early 2000s. After all, the overall cost is low, as the transgender/gender nonconforming population is extremely small, and the most costly treatments, genital surgeries, are one-time events. The economic burden of trans-inclusive coverage, in other words, does not support scaling back on coverage.
This is especially true given that the potential health gains of coverage are large. The provision of care that affirms an individual’s gender identity is of paramount importance, says Scott Leibowitz, a child and adolescent psychiatrist and medical director of behavioral health of the THRIVE gender and sex development program at Nationwide Children’s Hospital in Columbus, Ohio.
“In both youth and adults, it is extremely clear that the psychiatric risks associated with untreated gender dysphoria are exponentially higher than that of the general population,” Leibowitz says. “Anything short of receiving evidence-based care based on scientifically supported clinical guidelines compromises a transgender individual’s potential to be a productive member of society.”
While complete reversal of the ACA seems unlikely, the landscape is grim for provisions related to transgender and gender-nonconforming individuals. A United States District Court recently ruled against the enforceability of the nondiscrimination rule of the ACA. Representative Tom Price, who is likely to take the helm of Health and Human Services, has a consistent record of failing to support legislation that would protect against discrimination based on sexual orientation and gender identity.
Now transgender patients signed up for treatments that involve lengthy, measured planning are eager to rush forward with their surgeries. The unknowns are anxiety-provoking. Can insurance companies remove gender-confirming procedures from their list of covered benefits? If they do, what happens to someone in the middle of a transition?
As doctors, we have no good answers. We can only hope that these treatments—vital to trans people—are not relegated to luxuries only available to those who can afford them.
“We are hopeful that regardless of what happens, more and more insurers will eliminate exclusions for transgender care,” said Wu. “Because they are not based on science.”