Every morning, Sion Jesse gets up and tightly wraps cloth around his chest.
It has been 12 years since he transitioned from being a woman, but he has not yet been able to afford a mastectomy. His insurance plan won't cover the surgery despite his doctor deeming the procedure medically necessary because of Jesse's diagnosis of gender dysphoria.
Jesse's struggle is one that more insurers will face as a rule banning healthcare-related discrimination against transgender people becomes finalized. And insurers are warning that will lead to continued denial of claims.
Previously, civil rights laws enforced by HHS' Office for Civil Rights were based specifically on race, color, national origin, disability and age. This summer, the Obama administration proposed clarifying that those protections would block discrimination based on sex, including gender identity.
The rules apply to any provider, plan or program that accepts federal dollars and carries out the anti-bias provisions of the Affordable Care Act. HHS received more than 2,000 letters on the changes before the comment period closed on Nov. 9.
While the rule didn't go so far as to demand insurers cover gender transition treatments such as surgery, it does prohibit denial of medically necessary services related to gender transition.
Staff attorneys at the Tennessee Justice Center, a public interest law firm, said in a comment letter that many plans, including state Medicaid programs, use categorical exclusions to deny coverage on services that are routinely covered for cisgender individuals, or those who do not identify with their biological sex.
Plans, however, said they are struggling to understand and plan for implementation of the changes in a timely manner. They are leaning on the CMS for additional guidance.
For instance, the proposed rule says a transgender person should be able to identify a gender on applications for Medicaid or private coverage. However, more nuanced information concerning gender identity generally is not an existing field on applications under many current enrollment and claims systems; most systems simply document whether an individual is female or male.
Without that nuance, scenarios could result where, for example, a transgender woman indicates female on an enrollment application but later seeks services for men, like a prostate exam.
A subsequent denial "May occur through no fault of the health plan or individual seeking coverage,” Jeff Myers, president and CEO of the trade group Medicaid Health Plans of America, said in a comment letter.
Plans hope HHS' Office for Civil Rights extends a good faith compliance protection while issuers adjust, said Kris Haltmeyer, vice president, Health Policy and Analysis at the Blue Cross Blue Shield Association. Non-compliance could lead to fines or loss of Medicaid and Medicare funds.
Cigna supports the rule but has requested an unspecified amount of time to make the changes, saying the insurance industry as a whole needs to find ways to better serve those with gender dysphoria while not entirely avoiding gender or removing the sex box from enrollment forms.
“We are concerned that the removal of a gender identifier could create an increase in abusive billing as well as adversely impact marketing efforts for wellness reminders, such as for mammograms,” David Schwartz, head of global policy at the plan, says in a letter.
“We are aware that the concept of gender goes beyond an individual's biology, but also recognize that biology remains relevant, particularly because not all gender transition treatments, especially surgery, are required or pursued,” Schwartz added.