You probably know this already, but here’s a reminder: Insurers are not your friends.
Neither are pharma, hospitals, health care providers, or pretty much anyone else who has a commercial relationship with you. Some may care more (or less) about your wellbeing, but they’re still not your friends.
But insurers are the worst. My father, who worked for a major auto insurance company, always told me that insurance companies are in the business of NOT paying claims.
It’s true. We all know it’s true. But it’s easy to forget sometimes, because often the people you’re interacting with at the insurance company (or pharma, etc.) are nice people, doing their best. They’re still not your friend, and their first obligation is not to you, but to their employer (and themselves, meaning they need to do what their employer instructs or they’re out of work). (Which doesn’t give us license to be mean to them, just a reminder to think of them as polite and pleasant, maybe even sympathetic, adversaries, rather than your friend.)
The reason I’m feeling a bit cynical on this Rare Disease Day is that I just read an outrageous example of an insurer not being the patient’s friend, and it’s a precursor to what I suspect will be even worse behavior in the coming years as gene therapy becomes common, especially for rare-disorder patients.
What happened is that a cancer patient needed a new, but FDA-approved gene therapy to save his life. You’ve probably already assumed that it would be expensive, and you’d be right. Close to half a million bucks, minimum, with up to another half a million in possible additional expenses.
Now, those of us on burosumab don’t even think that’s a lot of money, since we burn through that much in treatment costs every three years for our entire lives, while for the cancer patient, it would be the one treatment, and he was done. Chump change compared to a lifelong treatment.
But insurance companies are cheap. They don’t like to spend a million bucks, even if it would save a life. At first, they were a little stymied, because there’s a state law that said they MUST cover approved cancer drugs, regardless of cost. There was a loophole if there wasn’t consensus in the medical community that it was effective (We’ve heard that same tired old excuse in the XLH community), but it turned out that there was in fact consensus (just as there is for burosumab treatment for XLH).
The insurance company was out of standard excuses, so the management had to get creative. That’s when the [insert bad words of your choice here] executives came up with a simple strategy. All they had to do was play semantic games: “These cancer drugs aren’t technically drugs, they argued, they’re gene therapies. All Priority Health had to do was to exclude gene therapies from its policies, and it could say no every time.”
So they denied the treatment, and the patient died.
Not exactly an uplifting story for Rare Disease Day, but it’s the reality of life (and death) medical decisions when insurers are in charge.
Insurers are not your friends.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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