The morning after the election, Marci Bowers's phone was ringing off the hook. The gynecologic and pelvic surgeon already had a three-year waiting list for gender affirmation surgery, and after November 8, she was more in demand than ever.
"For two solid weeks [the phones] rang with people that are really frightened," Bowers said. "Many find that access to surgery and hormones is the single measure by which their stress is reduced. We scrambled to make arrangements for people to get in, so they can be covered."
Her patients, alongside transgender Americans across the country, were worried that with Republicans in control of the federal government, their long-standing promise to repeal the Affordable Care Act would become reality—and if the ACA was eliminated, their path to getting the healthcare they desperately needed would be, too.
"The consequences of not treating people are fairly devastating," Bowers said.
The introduction of the ACA extended gender-affirming healthcare to a huge number of trans Americans, leading to an estimated 24 percent drop in uninsured rates, according to the Center for American Progress in 2014. And through its Section 1557, it prohibited sex-based discrimination in certain insurance plans. But with the Trump administration's recent move to rescind federal protections allowing trans students to use the correct bathroom, an upcoming assault on those rights is beginning to look likely.
On December 31, Reed O'Connor, a federal district judge, issued a nationwide injunction halting the ACA's trans healthcare and abortion protections. The federal government had a March 1 deadline to appeal; on Friday, the Justice Department asked O'Connor for an extension to respond "to provide opportunity for new leadership at the Department of Health and Human Services to become familiar with the issues in this case." On Tuesday, O'Connor granted an extension to respond until May 2. The injunction is currently being challenged by the ACLU of Texas and River City Gender Alliance, as the Washington Blade reports.
If the Republican ACA replacement lacks anti-discrimination protections or if Section 1557 is ultimately thrown out, some insurers will once again be allowed to deny gender-affirming health coverage, and untold numbers of trans Americans will lose a lifeline to lifesaving healthcare.
Not all transgender or gender nonconforming people choose to transition, but for those who do, the cost of gender affirming medical procedures can quickly become staggering. An extensive slate of surgeries for transitioning from male to female at the Philadelphia Center for Transgender Surgery totals out to $140,450 ($124,400 for those transitioning from female to male). Other costs, such as electrolysis hair removal, can run above $20,000, and often aren't covered by insurance.
Section 1557 only applies to insurance plans that receive federal funding, trade on state insurance marketplaces, or are provided by employers in healthcare-related industries. Some states have their own non-discrimination provisions similar to 1557, which will be crucial for the trans community to navigate should it be repealed in the years ahead. According to the National Center for Transgender Equality, as of May 2016, only 14 states offer explicit policies banning trans exclusions from private insurance and Medicaid coverage.
"If you're in a state that doesn't have state-based protections, that's where a repeal of 1557 and the Affordable Care Act will hit the hardest," said Andrew P. Cohen, a staff attorney at Health Law Advocates, a nonprofit law firm dedicated to helping vulnerable clients overcome healthcare access barriers. "Where there aren't state protections, I think 1557 has created a really crucial floor of protection for the trans and gender nonconforming community."
Elizabeth Down, an associate in the Employee Benefits & Executive Compensation Group at the international law firm Proskauer, echoed Cohen's emphasis on state-level regulations. "State regulation in this area is a relatively recent development, and it would not be surprising to see more states adopt similar provisions going forward, especially if Section 1557 is repealed," said Down. "There are also other sources of law that may provide some level of protection when it comes to transgender health benefits, such as state and local civil rights laws."
It's hard to say exactly how many transgender Americans would lose healthcare should 1557 or the ACA be repealed. But medical experts noted that the ACA opened doors to coverage for a swath of new patients and expressed worry for the already-marginalized transgender community should the worst come to pass.
A.C. Demidont, director of Transgender Medical Services at Quinnipiac University's School of Medicine, said the idea of losing health coverage has been terrifying for his patients. Preparing for the worst, she said, people had begun stockpiling their medications.
After the passage of the ACA, Anitha Srinivasan, a doctor at NYC Health + Hospitals/Metropolitan, noted an increase in requests for gender-affirmation surgery. "The people who will be most affected will be the ones already starting transition, literally leaving them in the lurch," Srinivasan added. "And this is a very vulnerable population you're dealing with."
Zil Goldstein, NP and program director at the Center for Transgender Medicine and Surgery at Mount Sinai, said that the consequences of stopping gender-affirming healthcare can be disastrous. "I've had patients who have gotten suicidal after stopping their hormone therapy," Goldstein said. "They have worked so hard to achieve the changes that they've seen with hormones, often going to multiple medical providers and enduring harassment from the people around them while transitioning, only to have that taken away."
Healthcare discrimination is just one of the ways our society widely marginalizes the transgender community, and further setbacks will increase the likelihood that trans patients may not return to see their doctors in the future, said Demidont. "They're used to being discriminated against in the first place, and when they start getting bills for huge amounts of money, the chances of them engaging in the healthcare system drop even more," she noted.
That marginalization is well-reported. Twenty-five percent of respondents to the 2015 National Transgender Discrimination Survey noted they had experienced insurance problems related to their gender identity, and more than half had been denied coverage for transition-related surgery in the prior year. Thirty-three percent had foregone seeking necessary care because of cost.
Many trans people go to desperate lengths to seek treatment. "I've seen girls go to prison for selling their HIV medications to buy hormones or get surgery," said Demidont. "I've seen women with HIV be repeatedly sexually abused because they were forced to do sex work to get their hormones paid for, their surgery paid for, or even their documentation changed. I've seen patients be routinely sent away from medical practices because they refused to see them."
If Section 1557 is struck down, Bowers said, trans people will likely become despondent. "The Trump administration is going to have blood on their hands," she said."I don't like to be overly alarmist about it because I don't tend to be that way, and there's a lot of painful horrible things that are happening.
"We're going in such a darkly different direction with this administration than we've been for so many years," she continued. "There's been so much progress. It's definitely catastrophic. This is going to mean the death of patients [by suicide.] The ACA gave people hope, and that hope is being taken away."