Friday, December 13, 2024

Luigi Mangione Wrote Online About a Spine Disorder. Other Patients Say It’s Hell

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Luigi Mangione, the 26-year-old man arrested and charged with the murder of UnitedHealthcare CEO Brian Thompson in Manhattan on Dec. 4, had a significant online footprint before most web platforms suspended his accounts. These profiles seemed to reveal a healthy, accomplished, well-adjusted young man — though there were red flags, such as his admiring review of the manifesto written by Ted Kaczynski, the Unabomber.

Other indications of Mangione’s mindset were his since-removed posts on a subreddit for people who have been diagnosed with spondylolisthesis, a potentially debilitating spinal condition that arises when a vertebra slips out of alignment. He was at one point active in the forum, which has since gone private, trading advice and words of support with others who were navigating symptoms and treatment options. He revealed that he had undergone a spinal fusion surgery in July 2023, with positive results — a procedure that some who know him have corroborated. (His account on X, formerly Twitter, shows an X-ray of just such a fusion, which joins vertebrae to keep them from moving apart.) Mangione wrote that his back pain from spondylolisthesis had worsened after he went surfing in Hawaii, where he lived, saying it hurt to sit down and that he experienced twitching leg muscles. A friend told People that Mangione had confided in him that the back pain made the prospect of dating and physical intimacy unlikely, and “constantly weighed on him,” leading to depression. His Goodreads account, now removed, showed that he had read several books about managing chronic back pain.

Soon after the fusion, Mangione posted on Reddit that it had been “the right decision.” But it was also after this surgical intervention that Mangione gradually cut off communications with friends and family, becoming isolated in the months leading up to Thompson’s killing. His activities throughout this period are a mystery that prosecutors will no doubt seek to unravel. Neither is it clear if Mangione continued to suffer back problems — as many as 40 percent of people who receive spinal surgery report continued pain — or other health issues.

Many other Americans with spondylolisthesis were interested to learn that they shared a disorder with the man accused of gunning down a health insurance executive, though few were shocked that he might have developed a grudge against the industry. Rolling Stone spoke with more than half a dozen individuals who have sought treatment for the condition or have a relative who did, often tangling with corporate red tape and skeptical doctors as they try to lead normal lives in spite of wracking pain. Some requested to remain anonymous, while others preferred to use only their first names.

“I’ve got grade 2 spondylolisthesis, with a bilateral pars break, disc bulge, and stenosis, leading to nerve compression and pain,” says Lisa Marie Basile, a writer in New York now considering spinal surgery herself — she had to jump through “a lot of hoops” just to secure a consultation. “The pain is worse than you can imagine for me,” she says. “What’s worse than the pain is how it limits you, though, and I would even say I am one of the ‘luckier’ patients living with it.” Basile, 38, used to be an avid swimmer and dancer but has had to let those passions go. “I can’t move like I used to,” she says. “There is a deep sense of grief in this that just becomes pure rage when you think of how insurance companies make it worse.”

Rax, who works a communications job in California, has already had surgery to treat spondylolisthesis and likewise reports difficulty in securing such necessary care. “It was a huge hurdle getting the surgery approved, including a super tight window [when] it could occur,” he says. “I was constantly on the phone with insurance, they miscalculated my out-of-pocket maximum, and it took hours upon hours just to get them to approve the claim that was justified. I was lucky that I had union-negotiated insurance from my graduate teaching fellowship, some of the best in the country at the time, otherwise I’m sure I would be in a different place.”

The logistics of treatment often involve stress and inconvenience that compound agonizing symptoms. Kathy Quellen, a 65-year-old registered nurse in Arizona says that thanks to her profession, she knows “a little more than the average person” when it comes to dealing with health insurance, but adds that it “does not matter” in what she calls “the roller coaster experience in American healthcare.” On her plan, she says, she regularly visits pain clinics for spinal epidurals and ablations (which deaden the nerves) to alleviate the pain from spondylolisthesis. But there’s a ridiculous catch: “Insurance won’t pay to do both the left and right sides of the back at one time,” she explains. “You have to make two appointments, because they feel you might have less pain after one side is done, and they don’t want to pay for two if they don’t have to.” Even though both sides of Quellen’s back are affected, and she has documentation to prove that they each need treatment, “I have to make two appointments and pay two co-pays, two weeks apart.”

A therapist in California, who requested anonymity because of her work, relates an alarming story about the medication she relies on to curtail her back pain from spondylolisthesis, which has transformed her life over the past decade. Once, when she switched insurance providers, the new company didn’t want to cover her prescription. “So I tried to explain, as did my doctor, that cutting me off of opioid pain meds abruptly would cause withdrawal.” She ended up paying for them out-of-pocket for two months — some $250 in all — while the problem got sorted. “I’m glad I had the money to pay for them,” she adds. She hadn’t been on opioids originally, because her doctors worried about addiction and told her to take ibuprofen — which she then used so much that she developed kidney disease, a condition that has mildly improved since she switched to opioids.

Like Basile, this therapist misses many leisure pursuits she used to enjoy: running, going to concerts, and touring museums. “The number one thing that hurts to do is standing,” she notes, making even activities most would not find strenuous too difficult for her. “So as a music lover, and an art lover, that’s been probably the thing that has impacted me on a regular basis the most.” Though she has not had surgery, she says she has tried “nerve ablation, physical therapy, exercise, rest, yoga, meds — you name it — to little effect.”

Extreme symptoms may not move an insurance provider to cover claims. “My mom had a lumbar spondylolisthesis occur due to degenerative disc disease, spondyloarthritis,” says Beth, a costume designer and seamstress. “At one point, she could not control her bladder or bowels. She was in so much pain that she had to crawl on the floor.” Her mother, in her early fifties, was able to get timely surgery, Beth says, “but even though she had already met her deductible for the year, Cigna still hounded her and tried to get her to pay for things she did not have to pay for.” She’s doing better a year on, “but my god the process was excruciating.”

And it’s not just the insurance headaches — patients with terrible back pain sometimes grow frustrated with medical professionals they regard as dismissive. Jeremy, a musician and engineering technician experiencing chronic pain along with limb numbness and restricted circulation, reports that physicians “do not take it seriously.” He says that he “quit going to the doctor 10 years ago as they don’t listen and just want the fee.” J.S., a software developer, concurs with that assessment. “As a person with advanced degenerative disk disease and herniated disk with nerve impingement who has suffered from chronic pain for almost three decades now, I can confidently say that [doctors] absolutely do not give a fuck, and I’ve never met a doctor that takes it seriously.” He adds that besides a spinal fusion, the only care options he’s been offered are physical therapy or cognitive behavioral therapy, “neither of which help enough to allow me to perform the basic activities of daily living without significant pain.” Surgery is out of the question, J.S. says, in part because “the description of the procedure had already made me uneasy,” but also because he had discussed it with a co-worker who’d had a fusion and “was extremely emphatic that he wished he had never had it done.” He has since spoken to two other people he said “regretted” the procedure.

One anonymous spondylolisthesis patient bluntly tells Rolling Stone, “It sucks,” sharing an MRI image that shows how their spine appears pinched due to misaligned vertebrae. They, too, have declined surgery, as it would have to be a fusion of four separate discs, and each additional fusion increases the risk of complications. As for Mangione, this fellow back-pain sufferer expresses surprise that someone so young would get a fusion surgery — on average, patients receiving such treatments are middle-aged. In one of his Reddit posts on r/spondylolisthesis, Mangione wrote that age should not be an obstacle to surgery. “Keep trying different surgeons,” he advised. “‘Nobody will operate on my back until I’m at least 40’ is nonsense coming from a medical professional who lacks perspective.”

Whether Mangione — who was in possession of a short manifesto condemning health insurance companies as “parasites” when he was detained by law enforcement in Altoona, Pennsylvania on Monday — might have been moved to violence by his experience with spondylolisthesis and health insurance, some can certainly picture this path of radicalization. “My insurer is also UnitedHealthcare, so lets just say the prosecution will be happy I’m not on the jury,” says the anonymous patient who has opted not to gamble on a four-disc fusion. Others don’t want their spinal disorder connected to the shooting in any way. “I am not interested,” a moderator of r/spondylolisthesis tells Rolling Stone. “This is a support group of people from all over the globe that do not wish to get swept up in the recent events in the U.S.A. Please respect their privacy.”

But, like it or not, a narrative has taken shape, with many across the internet hailing Mangione — yet to be extradited to New York on the murder change, let alone tried and convicted for it — as a justified vigilante. The slaying, his manifesto, and his medical history have unleashed a wave of contempt for the U.S. healthcare system as well as horror stories about its failures. It’s a conversation that Basile, who recounts the gauntlet of bargaining with an insurer that has denied her everything from a critical MRI to steroid injections for pain management, is glad the country is finally having.

“I don’t think this story is about Mangione at all, really,” Basile says, noting that she would never support gun violence. “And I don’t think this is about the CEO either. I think it’s about a revolution of the people who are constantly suffering at the hands of greedy insurance companies. I also think that chronic illness and disability communities have been saying this for years and years and years. But if this high-profile case is what it takes for everyone to get to the reckoning point, I’m fully here for it.”

 

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