Imagine living 28 years—your whole life—trapped inside the wrong body. Forced, through chemical happenstance, to go through your days within a fleshy conveyance that doesn’t match the spirit driving it. Now imagine that one day hope appeared, an unexpected opportunity to free yourself, to finally be yourself. Right there, within your grasp, leading you by the nose for a full year of preparation—only to be yanked away at the very last possible second because someone, somewhere, pushed the wrong button.
This is exactly what Thea Shaheen claims happened to her.
Born, and equipped, as Theodore Shaheen, she says she knew her whole life that she wasn’t who she anatomically presented to be. Thus it was no surprise when she says her doctors officially diagnosed her with gender dysphoria, the medical terminology for identifying as one sex while possessing the body of another, which can lead to psychological and even physical duress. It’s a diagnosis that has been making headlines of late, as New York Gov. Andrew Cuomo advised insurance providers in his state that they would have to begin covering gender-reassignment surgery judged medically necessary by a patient with dysphoria. That makes New York the ninth state to require such coverage.
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Unfortunately, Shaheen—a network support engineer in Providence, Rhode Island—doesn’t live in one of them.
It was just a year ago, in 2013, that she says she discovered the insurance her job provided had a clause that could help her make the changes she needed to become wholly herself.
“I saw in our employee literature one of our health benefits is transgender services, of which one is gender-reassignment surgery,” she explained from a hotel in San Francisco. “So I contacted the insurance company. It took me a little bit of time to find out what information I needed and who I needed to talk to, but I finally got ahold of somebody who was aware of our policy and who said, ‘Yes, that’s covered. That’s part of your policy.’”
Excited, Shaheen wasted no time and began interviewing surgeons, deciding upon Dr. Curtis Crane in Greenbrae, California.
“I had a consultation in January of last year,” she explains. “And when I decided that I liked that surgeon, they began working with my insurance company. They, too, received information that it was covered, and they received a pre-authorization.”
Shaheen says she then provided Crane with the necessary documentation from her primary care physician at Boston’s LGBT-centric Fenway Institute, including statements from her therapist and a psychologist. Everything was moving ahead smoothly, and continued to for the rest of the year.
“As far as we were aware, and as far as the surgeon was aware, the surgery was a go,” Shaheen sighs.
But then, just three days before boarding the flight on Dec. 13 of this year that would take her to the rest of her life, things started to get weird.
On Wednesday, Dec. 10, Shaheen was driving to Boston when she says an administrator from Crane’s office called to alert her to an issue with the insurance company, which was suddenly reversing course and declining coverage for the operation.
“I didn’t really have any coherent thoughts at that time, it was pretty shocking,” she admits, her voice wavering slightly. “I thought, ‘This has to be, they said it.’ And even the surgeon was like, ‘Yes, this has been said, we have all the evidence that this should happen.’”
The next morning, Shaheen says she began frantically working with the insurance company, Blue Cross Blue Shield of Rhode Island, and her employer, hoping against hope that this was just some mixup. Ultimately, Shaheen noted wryly, it was. Just not in her favor.
“Literally all we got, as far as I’m aware, is that they simply made a mistake when they said I had [coverage], and I didn’t. We worked with one of their supervisors, who talked to their management directly to get a final decision. Which came on Friday. And they said ‘You know, this isn’t fair, but what should we do?’”
Her ticket to California couldn’t be refunded. Neither could her three-week, multi-thousand dollar stay, which was supposed to be a recovery period. So she boarded the plane, unsure as to what to do next.
In order to pay for the surgery out-of-pocket, Shaheen says it would cost her $30,000—and much, much more if there were any complications. But for her, the peace of mind that comes with actually inhabiting the correct body isn’t something you can put a price tag on.
“The thing that’s been most troublesome about it to me is not that it’s not happening right now,” she vented. “But I’ve spent the past year anticipating this, I knew it was coming. I was thinking, ‘Oh this is the last year I’ll have to deal with this,’ or ‘This is the last time this is gonna happen and next year will be better.’ And now that’s not true. Now I have to possibly wait more than another year, and it’s not fair.”
As for Blue Cross Blue Shield, they responded to The Daily Beast’s request for comment with a boilerplate email, sent by Assistant Vice President of Public Affairs Stacy Paterno: “BCBSRI works closely with our employer clients to create health insurance products that allow them to meet the needs of their employees and manage costs. While we do not comment on individual member cases, we make every effort to provide accurate and timely information to all of our members.”
Crane’s office did not respond to multiple attempts to contact them.
Shaheen, for her part, doesn’t want to be made a martyr in this story, but instead hopes that it shines a broader light on the issues faced by transgender Americans.
“I came so close, and if this was a procedure that wasn’t what it is, would the same outcome have happened?” she asks, frustration palpable in her voice. But she also knows that, ultimately, it’s just her against a seemingly heartless health-care machine. “So even though they made a mistake, there was nothing that they did illegally. They were in the legal right to do what they did. They were correct in the end, and I can’t do anything about that.”
There may be hope again on the horizon.
Outside of the now nine states that mandate insurance coverage, this past fall the Affordable Care Act also started to cover gender-reassignment surgery, and last spring Medicare lifted its ban as well.
And Thea? Well, she’s not giving up.
“I’m going to put myself back together, recompose myself. Return back to Rhode Island for work, and make a plan for how I’m going to get the coverage I need, and see what options I have.”
UPDATE:
On December 29th, the same day her story ran in the Daily Beast, Althea Shaheen was contacted by Blue Cross Blue Shield of Rhode Island.
“Basically, I was contacted and asked if an appeal could be opened on my behalf,” she told me from her home in Providence. “I was going to do it myself, but was waiting for the new year.”
Two days later, on New Year’s Eve, she had her answer.
“They determined that because they had made the mistake, and it had prolonged for so long, they were going to go ahead and honor the approval.”
Althea is now re-scheduled with her surgeon for this spring.
“I’m really happy,” she admitted. “It was tough to deal with, but at least its gonna happen, and everything’s gonna work out.”
