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.
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.
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.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.
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. 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.
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