Starting in 2009, Jack Jimenez’s face would feel tingly and his vision would turn wonky. Sometimes it felt like he was getting a deep-tissue head massage, even when no one was touching him. The now 37-year-old from California tried for five years to get help from various doctors, many of whom told him he was just anxious.
“Of course I’m anxious. But also legit I have a problem. Every single doctor was just terrible,” he said.
At the time, Jimenez was working as a caregiver. “I worked 24-hour shifts because a client could die at any second,” he said. “They weren’t required to give us insurance because we were all part-time employees.”
He tried to obtain private health insurance, only to be denied because of a pre-existing condition – his gender dysphoria diagnosis. Jimenez is trans and him living his true identity was reason enough to deny him coverage.
It wasn’t until 2014 when the Affordable Care Act (also known as the comprehensive healthcare reform law and as Obamacare) was implemented, that Jimenez was able to get insurance, the specialist treatment he needed, and a diagnosis because the law eliminated exclusions for pre-existing conditions. It turned out he had pseudotumor cerebri, a condition in which spinal fluid leaks into the skull. The symptoms mimic those of a brain tumor, including vision issues, headaches and ringing in the ears.
“It’s that very first doctor appointment. It’s unbelievable,” he said. “To have people look at you and go, ‘Oh, OK. Yes. I can see why that’s a big concern. Let me write down these three pages of weird symptoms that you’ve been having and let’s do some tests and figure out what the hell is wrong with you,’” he said. “Nobody, nobody had really done that at all.”
After several rounds of tests and multiple MRIs, he started treatment and is healthy with minimal symptoms today. But the law that allowed Jimenez to finally find some relief is at risk of being entirely done away with.
The Affordable Care Act (ACA) is scheduled to be argued before the supreme court on 4 November. The lawsuit – which has been widely panned by legal experts – was brought by 19 Republican state attorneys general and seeks to have the entire landmark healthcare law tossed out. The future of the ACA was a common theme during hearings for Judge Amy Coney Barrett’s nomination to the high court – now that she has been confirmed, she will soon be hearing California v Texas, a case challenging the landmark healthcare law.
“Life for trans people in terms of access to healthcare before and after the ACA is like night and day,” said Shannon Minter, an expert in transgender law and an attorney at the National Center for Lesbian Rights. But many Americans don’t have a grasp on the important role the ACA has played for LGBTQ people, especially those who are transgender, potentially making this fall’s supreme court arguments the most critical transgender rights case ever heard at the court.
“If you were just going to point to a major case currently before the court that has the potential to have the greatest impact on transgender people it’s unquestionably the ACA,” said Minter, “I’m amazed that more people don’t understand this, that this hasn’t gotten more attention.”
Though the ACA was signed into law in 2010, the most major aspects of the law, like protections for people with pre-existing conditions, weren’t phased in until 1 January 2014. “Even up to 2013, you had trans folks who could not get a policy, even if they all the money in the world. Insurance companies did not have to sell them a policy,” said Sharita Gruberg, the director of policy for the LGBT Research and Communications Project at the Center for American Progress.
Trans people who could access insurance before the ACA – often those who worked for very progressive employers or worked in states with early health care non-discrimination laws – could not generally get coverage for transition-related care due to blanket exclusions by insurance companies. That meant that trans people were on their own when it came to paying for hormone replacement therapy or transition-related surgeries like a vaginoplasty or mastectomy.
That also meant that a trans woman who could not afford a $20,000 affirming procedure would not be able to access a potentially life-saving surgery.
People with untreated gender dysphoria often deal with high rates of suicidal ideation. The 2015 USTS found that 41% of respondents reported having attempted suicide at least once in their lifetimes, with 7.3% reporting attempts within the last year. There are many reasons researchers have identified contribute to this statistic, from family rejection to identity-based violence and discrimination – but access to gender affirming care like hormones and surgery have been shown to have a positive effect on trans suicidality.
Section 1557 of the ACA bans healthcare providers and insurers from discriminating on the basis of sex. The Obama administration interpreted this provision to include trans people in 2016. The rule was set to begin being enforced on 1 January 2017, and insurance companies based their 2017 yearly coverage on the new rule, writing in basic protections and often wiping out exclusions for trans-related care for the upcoming year. However, a federal court stayed the rule, and eventually vacated it, the day before its official implementation, meaning technically Section 1557 was never enforced.
But that didn’t stop most insurance companies from doing away with their transgender exclusions in the meantime. Generally, adding coverage for transition-related care added very little additional cost to premiums, and some insurance companies found it more cost efficient to cover the surgeries rather than cover the mental healthcare that comes along with denying coverage.
The Trump administration, however, had its eyes on the law’s trans protections and in mid-June this year finalized a rule cutting LGBTQ people generally, and trans people specifically, out of the government’s interpretation of sex discrimination under the ACA. This meant that insurance companies could once again exclude transition-related care from their coverage plans.
That rule was, in turn, stayed by two federal courts citing Bostock, which was decided just days after the Trump administration finalized its updated 1557 rule.
Keith said Out2Enroll has tracked how the ACA has pushed insurers to remove these exclusions, and she’s happy to report significant progress on that front. “Now we’re seeing most insurers have removed these exclusions,” she said. There are issues with individuals getting denied specific care for bureaucratic reasons, she said, but by and large the blanket exclusions are largely a thing of the past.
But things could become uncertain if the ACA is thrown out in its entirety. According to Keith, most insurers dumped their trans exclusions because they became illegal, but they may not automatically bring back blanket exclusions if the law is thrown out by the supreme court.
“We’re still not at the point where people are getting, in every case, the coverage that they both need and are required under the law to get. [But] as long as we have the ACA there’s some recourse. If that’s gone, the insurers might not go back to categorical exclusions, but they also are not going to have this law that requires them to cover transition related care.”
Jimenez worries about a day in the future when he may again become uninsurable due to his trans identity. He’s currently insured through his partner, but his 14 year-old son was born with a congenital heart defect. If his partner lost their insurance, and the ACA is thrown out, both he and his son would be at risk. “It’s the whole uncertainty of everything at every moment, all the time right now,” he said. “Everything just feels really hopeless. And this is another thing to just toss on everybody.”