I was packing the day before our flight when the phone call came. I had a stack of Natalie’s pajamas — the soft ones, cut low enough to sit below her hard cervical collar — a bag of medications for her carry-on, and comfortable clothes for her to wear during the five or six weeks we’d be staying in the Ronald McDonald House while she recovered from surgery. She’d offered to help, and she’d tried, but it had only taken two attempts at standing in front of her closet before the headache and the nausea and the dizziness took over, before her vision had narrowed to a pinprick and she had to lie back down. She was giving me directions from bed when the phone rang.
Her surgery was canceled, the hospital said. The insurance company had denied their request for coverage of the surgery, and then denied my written appeal and ignored the letters from multiple surgeons and her specialist. She could find comparable local care in Seattle, the insurance company said, and there was no need to travel out of state for care.
I got a copy of the denial in the mail later that day as well. The impersonal letter included assurances that her case had been reviewed by a qualified expert, and provided a list of providers from a basic search of the company’s directory of local neurosurgeons. It was 100% incorrect.
My daughter has Ehlers-Danlos Syndrome, a connective tissue disorder that can wreak havoc on every system in the body. In her case, her high cervical spine is unstable, and her brainstem is sagging out of the base of her skull, acting a little bit like a cork in a wine bottle, stopping the flow of cerebrospinal fluid between her brain and spinal column. It’s rare, but treatable.
She needs an uncommon surgery, one that fuses not only her high cervical spine, but also fuses her skull to her spine. And while the neurosurgeons are in there, they need to open up the space where her brainstem sags — just a tiny bit — and then stabilize it so that cerebrospinal fluid can flow. Operating on people with EDS is its own specialty, since the disorder can also limit the effectiveness of some anesthetics, and the poor quality of the tissue itself can make surgeries more complicated.
“This photo is also very Natalie, and taken before her symptoms had progressed,” the author writes.
This is all information that the insurance company would know had it had the basic decency to talk to Natalie’s neurosurgeons, her EDS specialist, her parents or Natalie herself. Instead, the company refused to agree to care in another state. Because it had a list of surgeons.
Ehlers Danlos Syndrome exists on a spectrum, like so many genetic conditions, and symptoms can be mild to severe. It’s not even that rare, but it is poorly understood, and finding providers that can treat it effectively is challenging. We’ve been shuttled between specialists for 10 years. Racing heart? Cardiology. Dizzy? Neurology. Have you considered that she’s just anxious? Family history of injuries? Genetics. Definitely orthopedics for all the times she tore a ligament doing a noncontact sport like walking. Fainted in school again? Go to the ER. But also, have you considered that’s she just anxious? A Google search of providers is not the equivalent of informed, qualified care. We’ve seen enough providers to know the difference.
Natalie started having noticeable symptoms when she was 8. By 9, she was nauseous every time she ate. By 12, she was dizzy when she stood up. At 15, when she returned to in-person school after the pandemic, she needed school accommodations just to make it through the day. At 17, the bottom fell all the way out and she did a modified senior year from bed. She graduated last June — with a four-minute ceremony in our living room — and isn’t able to go to college or work until she has surgery.
In some ways, Natalie is the lucky one. We had the resources to find specialists, who in turn found answers. Natalie had her first upright MRI a few years ago, which showed her unstable spine and “cerebellar ectopia” — her brainstem starting to fall out of the opening in the base of her skull. The insurance company refused to pay for that imaging as well; we were told she wasn’t sick enough.
One of the many times Natalie had to go the ER. “There are so many of these photos,” the author writes.
We are not alone in our struggle to get needed care in the maze of denials and delays that is the American health insurance industry. KFF Health News reported in 2021 that of the insurers with the highest volume of claims, “denial rates ranged from 4.7% to 41.9%.” The outlet goes on to say that only about 1 in 500 claims is appealed, and on appeal, 59% of those denials are upheld. We were one of the 499 people who chose not to appeal the insurance company’s denial for Natalie’s imaging. We needed answers — and quickly. Without that MRI, her care would have stalled, so we paid for it ourselves. It felt like the system was rigged against us.
It felt that way, because the insurance industry designed it to function that way. In 2023, ProPublica reported that both Cigna and UnitedHealthCare used a review system that allows doctors who are hired by the companies to deny claims without even reading them, with a simple “click and submit” process. (One doctor reportedly denied 121,000 claims in two months). An analysis of a 2023 survey of 4,803 insured people found that “nearly half of adults who experienced care delays because of a denial of coverage said their health problem worsened as a result.” In October of this year, ProPublica reported that many insurance companies contract with EviCore, a company (owned by Cigna) that uses an algorithm to force more preauthorization reviews. This process leads to higher rates of denied claims: Their sales team has pointed to “a 15% increase in denials” and a “3-to-1 return on investment” for the companies using EviCore.
The denials across all insurance companies and types of care are so outrageous that NPR features a “Bill of the Month” segment, highlighting unpaid medical bills and the wild reasons insurance companies refused to pay.
After two years of monitoring and physical therapy, of medication trials and intermittent use of a hard cervical collar, Natalie’s symptoms got worse, and so did her imaging. The insurance company did cover the follow-up scans, since we had proof — in the form of her first MRI — that, yes, there was a structural problem. But what would we have done without the resources to pay for her initial scan? This just seems like one more example of the fact that patients without the resources to pay for denied care suffer the most.
When Natalie’s symptoms progressed, our excellent doctors directed us to the very few surgeons in the U.S. who could do the surgery my daughter needs. The surgeon we chose in the end asked her to go from wearing her hard cervical collar when she was symptomatic, to wearing it all the time, as a 10-week trial to see if the surgery would help. After three weeks, she could sit up for a few hours. We could watch a movie together. At six weeks, she could leave the house once or twice a week. We went to Target for 10 minutes. Tiny gains were like magic for Natalie. At the end of the trial, we met the surgeons in person and scheduled surgery for September 23, 2024. Back home, Natalie waited, wearing her collar full time. Maybe it’s strange to say she was excited for brain surgery, but she was ready. She was hopeful that the surgery might let her go to college, even if only from her bedroom. In her wildest dreams, she wanted to dance again. Then, on September 20, her surgery was canceled..
To the insurance company’s credit, it assigned Natalie a case manager. That case manager is a gem. She listened to us, quickly confirmed that there was not actually local care, and authorized a single case agreement to cover Natalie’s surgery with her chosen surgeon. She thought it would be a quick process — just sign some paperwork and get Natalie back on the schedule.
I was hopeful at the beginning. Helpful. Thankful. So kind. I thought we’d get farther, faster by being polite and patient. It would go through “any day now,” the case manager said. “I already approved it, but now it’s with the negotiations team,” she told us. “It should be quick.”
Two weeks in, I was puzzled, but still hopeful.
“Why are there so many delays for what should be a quick process?” I asked. “The insurance company works with this doctor all the time; if we lived in New York state, there would be no problem, right? And even Natalie’s single case agreement” — the insurance company’s term for allowing Natalie to have surgery with a doctor that is technically “out of network” — “is simple, right? Something that happens every day?”
“Yes, it is,” I was assured. “We even do single case agreements with this doctor often, because he’s so specialized.”
Three weeks in, I got an email that said the insurance company was waiting on paperwork from the hospital, and couldn’t start negotiations until it had that.
“Start negotiations?” I asked. “As in, we are three weeks into this very quick process, and still at the beginning of the first step?”
“Well … yes, it seems that way,” the case manager told me. “I’m not sure what the delay is since I’m not part of the negotiations. I can only approve care, and then it’s someone else’s job to negotiate payment. Then Natalie’s paperwork has to get approved by the insurance company’s legal department.”
“Does the negotiations team know that Natalie had an unstable cervical spine?” I asked. “Do they know she had pressure on her brainstem? Do they know what a brain stem does?” (For the negotiators and lawyers out there, a brain stem controls important bodily functions — like breathing.) “Do they know that her instability could get worse, as it had last year? That it can cause permanent damage?”
“I will tell them,” she said. But she couldn’t speed them up.
Natalie getting an infusion. “This is what it looks like when you are too comfortable in that infusion chair, because you are there every week — and it’s the only time you leave the house,” the author writes.
As of this writing, we are now well into the fifth week of negotiations. The insurance company has an army of people who are very concerned about paperwork and precise wording. Those people do not seem concerned about my daughter. My kindness and patience has shifted to fury.
I have reminded the insurance company that the hospital and surgeons were in touch in July, that the company managed to ignore and then deny those requests over and over with great speed and efficiency while providing incorrect information about who could help Natalie. I have pointed to the systemic process of denial and delay that harms patients and is terrible for their own staff as well.
I’m fairly certain Natalie’s case manager would climb through fire to get Natalie care if she could, but her employer’s process puts so many layers between patients and approval that there is nothing else she can do. I think I told the CEO of the insurance company to go fuck himself on the recorded line. I hope he hears it.
There is currently no signed paperwork. There is no agreement. There are just delays. There are just negotiations. Normally, the next step would be a discussion over dollars and cents. However, we’ve been told the plan now is to try and skip that, and just tell the hospital the insurance company will pay whatever is necessary to get Natalie’s surgery. What a business plan — deny care, then delay, then hope that patients either give up or die. For the few people left fighting for care, use those millions of dollars to cover the cost of paying top dollar for the care you failed to negotiate while you waited out a war of attrition? Seems like that’s how the system is designed.
So, congratulations, insurance company. You’ve taught Natalie that no matter how much her family loves and fights for her, no matter how many specialists document her need for care, it doesn’t matter in the end. The strength of the evidence doesn’t matter. Somewhere out there, there is an accountant or a lawyer who knows nothing about Natalie — nothing about her condition and maybe nothing about medicine at all. And somehow, that’s the person who decides if and when Natalie gets the surgery she desperately needs.
“There’s no college or job or social life for Natalie right now, but at least there are cookies,” the author writes.
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I’m not giving up. But this could have been so easy. Natalie should be in New York, well into her surgical recovery. Instead, she remains at home, wearing her cervical collar, nauseous, dizzy and in pain, with zero control over her fate. She is the one who has gone from choking on food to choking on water while we wait for the insurance company, a piece of a multibillion dollar industry, to nickel-and-dime its way to an agreement. In the end, it’s always the patients who suffer. It’s egregious. It’s immoral. And for Natalie and the thousands of other patients just like her, it’s a terrifying wait.
Beth Swanson is a freelance writer in Washington. When she’s not on the phone with the insurance company, she writes about parenting, active family life, health and health care. Before she became a writer, she was a physical therapist for 15 years. She never expected to need the skills and knowledge from both of those careers to get her daughter health care. Follow her @write4chocolate on X/Twitter and Bluesky.
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