Len Meyer knows what it’s like to fight a health insurance company for coverage.
Meyer, who is nonbinary and transgender, spent more than six months battling an insurance company to cover a double mastectomy. The company claimed the procedure wasn’t medically necessary, and denied it three times before the insurer agreed to cover it in 2015, Meyer said.
“It was really frustrating,” said Meyer, 47, of Bloomington, Ill. “For me to feel like I was my true, authentic self, having that surgery really made a change for me.”
More transgender individuals may find themselves confronting similar obstacles to care if the Trump administration finalizes a proposal to roll back a regulation of the Affordable Care Act that prohibits discrimination in health care based on gender identity.
That Obama-era regulation, which went into effect in 2016, applies to health care providers who receive federal funds, which most do. Federal rules also prohibit discrimination based on gender identity in health insurance, but the proposed changes would undo those rules as well.
A federal court has temporarily put enforcement of the regulation on hold, but the Trump administration wants to go even further, doing away with the rules entirely.
Opponents of the change worry that if the protections are removed, transgender people could be denied gender transition services or even routine care, such as pap smears and prostate cancer screenings, because of their gender identities. They also worry it could cause many transgender people, who often face obstacles to getting medical care, to stop seeking needed medical services.
Illinois already has taken steps to safeguard the heath care rights of transgender residents — but they still might not be immune to changes at the federal level. The Illinois Human Rights Act prohibits discrimination against people based on gender identity.
But the state law doesn’t apply to self-funded insurance plans, the kind often offered by large employers. About 68% of workers with insurance through their employers were covered by partially or completely self-funded plans in 2016, according to the Kaiser Family Foundation.
The U.S. Department of Health and Human Services has said the change is necessary because of legal issues and to “relieve billions of dollars in undue regulatory burdens,” stated a notice published in the Federal Register in June, shortly after the administration announced the proposal. The proposal could be finalized in coming months.
Conservative groups have applauded the proposal. Revising the regulation would ensure that doctors and hospitals don’t have to perform gender transition surgeries if the doctors believe they’ll cause harm or they conflict with their beliefs, said Luke Goodrich, an attorney for the nonprofit Becket Fund for Religious Liberty.
“You have doctors and hospitals who are saying, ‘We want to provide top-notch care to transgender individuals, but we think some of these procedures are actually harmful according to not only our religious beliefs but also our medical judgment,’” Goodrich said.
But those against the proposal worry that changing the rules might embolden some doctors and insurance companies to think twice about services they offer to transgender people. Opponents include the Chicago-based American Medical Association, the Illinois Department of Insurance and the American Hospital Association, among many others.
Nearly 156,000 comments on the proposal were submitted before the comment period closed in August.
Peeling back the regulation would send a message that, “(Transgender) people in particular, can be discriminated against and the federal government won’t step in,” said Mike Ziri, director of public policy at Equality Illinois. “That’s just a terrible message to send to a population that already experiences significant discrimination in the health care system.”
Many transgender people avoid doctors out of fear over how they’ll be treated, according to the National Center for Transgender Equality. About 24% of Illinois transgender people who responded to a 2015 survey by the center said they did not see a doctor when they should have in the previous year because of such concerns.
Also, 28% said they had a problem with health insurance in the past year because they were transgender, and 33% who saw doctors said they had at least one negative experience related to being transgender, such as being refused treatment or having to teach the doctor about transgender people in order to get appropriate care.
Oli Rodriguez, who splits his time between Chicago and Los Angeles, has experienced that firsthand.
Rodriguez, 39, spent a lot of time calling doctors’ offices last year to find a new primary care doctor when he switched insurance plans and first started living in Los Angeles. Sometimes, it grew so frustrating, that he asked his partner to take over making calls.
Rodriguez, who is transmasculine, said he was told repeatedly by receptionists that they didn’t understand what he was talking about or that they didn’t know “if we have the capacity for that care,” when he asked how their physicians handled care for transgender patients.
Rodriguez said in a way he understands their reaction. But also, “I’m a human, right,” he said.
He said he had similar issues several years ago when he was searching for a primary care doctor in Chicago before he found Howard Brown Heath, which specializes in caring for LGBTQ patients.
Howard Brown, which has 12 clinics across the city, sees about 35,000 patients a year, including people from neighboring states, said Aisha Davis, manager of policy and advocacy at Howard Brown.
Davis expects more out-of-state patients will visit Howard Brown should the federal regulation be rolled back.
The proposed rule change also would eliminate a prohibition on discriminating against patients who’ve had abortions and remove requirements health care providers now face to provide certain notices to patients in multiple languages.
In its proposal, the administration cited a 2016 federal court order finding that the Department of Health and Human Services exceeded its authority when it defined sex discrimination, which is prohibited by the Affordable Care Act, to include gender identity. The order has temporarily stopped the federal government from enforcing the regulation.
That order stemmed from a lawsuit challenging the rule that prohibits discrimination in health care based on gender identity. The states of Texas, Nebraska, Kentucky, Kansas, Louisiana, Arizona and Mississippi were among those that filed the lawsuit, along with south suburban Specialty Physicians of Illinois.
“The Regulation forces doctors to perform controversial and sometimes harmful medical procedures ostensibly designed to permanently change an individual’s sex — including the sex of children,” the lawsuit states. “Under the new Regulation, a doctor must perform these procedures even when they are contrary to the doctor’s medical judgment and could result in significant, long-term medical harm.”
If the Trump administration finalizes the proposed changes, transgender patients who are discriminated against by doctors or insurers may still be able to sue over discrimination, said Gillian Branstetter, a spokeswoman for the National Center for Transgender Equality. Such cases were successful before the regulation went into effect, she said.
The proposed rule change also comes as the U.S. Supreme Court is set to consider a somewhat similar issue — whether a prohibition on employment discrimination based on sex also bars discrimination based on gender identity, within the federal Civil Rights Act of 1964. The court is scheduled to hear arguments in that case Tuesday.