Mangione isn't alone. I feel desperate with the same condition.
Key Takeaways
Patient Insights
"I went to the emergency room for X-rays: a pars defect and a shifted vertebrae at L5-S1. I was referred to a neurosurgeon, who tried to get MRIs. Denied. I was forced to go through 6 weeks of physical therapy instead." - Lisa Marie Basile, patient living with spondylolisthesis
"If my MRI had been done sooner, my physical therapist could have better tailored my physical therapy. If it had been done sooner, I could have tried to attain pain-relieving epidural injections earlier." - Lisa Marie Basile, patient living with spondylolisthesis
After Luigi Mangione—the man who allegedly shot and killed UnitedHealthcare CEO Brian Thompson at gunpoint—was arrested a few days ago, the Internet cracked open. We saw a deluge of feverish conversation about possible motives, endless memes glorifying Mangione, and a flurry of heart-wrenching manifestos supposedly written by Mangione.[]
Mangione is allegedly living with spondylolisthesis, a condition that occurs when one vertebra slips out of place onto the vertebra below it. This spinal disorder can lead to chronic pain, limited mobility, and significant physical and emotional challenges. And I have to say, I understand—as a patient who lives with the same condition.[]
I watched as Mangione became a sort of “folk hero,” making people feel validated in their own anger and grief. In a sense, people saw his actions as an “eye for many eyes,” in that Thompson’s death was offered up in the name of millions waiting for approvals and jumping through relentless insurance hurdles to get the simple care they need. Or dying while waiting. Or living such a desperate quality of life that death seems easier.
It is clear that a change is needed. We need to treat patients like humans, not sources of profit.
Like Mangione I also have spondylolisthesis
I have ankylosing spondylitis, but it was mostly controlled. And then, two summers ago, I was dancing at a Fitness Marshall cardio dance concert. The whole room moved in unison, all of us swaying on the floor as the lead dancers took the stage. I felt the sovereignty of a body that could mostly move without pain. But that moment kicked off a new part of my life.
Over the next 2 years things devolved. I stopped dancing. I stopped being able to swim like I used to. I stopped being able to travel—one of my most-beloved hobbies—without navigating my entire life around what my body might do.
It became harder and harder to move without pain and to walk for long periods. Standing became unbearable. My rheumatologist thought it was inflammation. She tried to help me, but she couldn’t get pain management injections approved by my insurance. I’d tried and failed several medications: basic NSAIDs, Meloxicam, Oxiprozin, and a round of oral steroids.
Finally, I went to the emergency room for X-rays: a pars defect and a shifted vertebrae at L5-S1. I was referred to a neurosurgeon, who tried to get MRIs. Denied. I was forced to go through 6 weeks of physical therapy instead.
Finally, I got images. The consensus? Grade II spondylolisthesis, bilateral pars break, compressed nerves, a bulging disc, stenosis. And all of this without yet meeting my deductible. If I didn’t have insurance or was worse off financially, where would I be? I cannot even imagine.
My surgeon thinks I should have a two-level spinal fusion with spinal decompression, and yet even he said it could be hard to convince insurance to let him do the two levels. He essentially told me, I could do L5-S1, but they may say L4-L5 isn’t bad enough.
“Bad enough.” As if they could know better than a fellowship-trained neurosurgeon. As if they feel the way I toss and turn in my sleep. As if they know what millions of patients go through every single day.
The pain is all-consuming at times, and yet I have more strength and mobility than so many people living with my condition. I think about those who have lost everything.
"This is all inhumane; there’s no doubt about it."
— Lisa Marie Basile
If my MRI had been done sooner, my physical therapist could have better tailored my physical therapy. If it had been done sooner, I could have tried to attain pain-relieving epidural injections earlier. If, if, if. Your patients know the story. So do you.
Understanding the evolving conversation
This isn’t normal. We shouldn’t make this sound normal. . It shouldn’t be normal that patients have to play the denial and appeal game while their bodies become collateral.
Mangione’s alleged actions have led to dialogue about what it means to suffer and to witness suffering—and that, to me, is the heart of this story. It’s not only about Mangione. It’s not even about Thompson. It’s about all of us. If people sound cold and heartless, it’s because we’ve reached fever pitch.
But it’s important to remember that this conversation isn’t new. Patients living with chronic health conditions have been screaming to be heard, fighting for better legislation, and advocating for a better world.
We deserve so much better. And it takes more than patients saying this. It takes everyone, including the ones who, fortunately, cannot empathize.