Insurance Company’s Treatment of Immune Deficiency Patient Earns Them a Big Middle Finger

While the national conversation on healthcare has recently and rightly focused on the political debate over the Affordable Care Act’s future, it’s worth remembering what’s happening on the “street level” of healthcare, at the intersection of policy and real patients’ lives. Unfortunately, what’s happening at that level is all too often a tooth-gnashing, blood-boiling shit-show.

The frustration is real. Source: www.giphy.com

We all know, on some level, that healthcare and health insurance is a business. Whether it’s a business first above all else or a business second after the well-being of patients depends on whom you talk to.

In the case of Amy Bowell McClean of Omaha, Nebraska, the answer seems all too clear-cut. Amy is living with an immune deficiency disorder, which leaves her body susceptible to life-threatening infections.

Along with a range of precautionary measures to prevent infection—including traveling with masks and gloves and inhaling a saline solution—she’s also been taking monthly injections of the immunoglobulin therapy Gammagard. The drug cost her a hefty $900 a month out of pocket, but insurance covered the remainder—which could be as high as an additional $10,000 a month.

So far, so good.

But not long ago, Amy’s doctor decided to increase her dosage by 50 percent. Amy’s insurance provider responded by denying the claim, saying it wasn’t medically necessary. The decision was appealed and temporarily overturned until it could be re-evaluated in March.

Meanwhile, the National Immune Deficiency Foundation has expressed an interest in getting involved in Amy’s case. They regularly intervene to help educate insurance companies about what patients with immune deficiency disorders face and to advocate for updated policies.

While that bodes well for Amy’s case—and let’s hope it does, because she needs to fly regularly for work and probably wouldn’t be able to without treatment—it does raise a good question. Should people have to work so hard to get insurance companies to listen? Why don’t the assessments of individual patients’ doctors carry more weight than a set of treatment guidelines written by people who’ve never met the patients impacted by them?

The “one size fits all” philosophy may work great for socks, but it sucks for healthcare.

Everyone would love to keep costs down, but it makes no damn sense to do that on the backs of individual patients who don’t neatly fit into a set of treatment guidelines. If Amy can’t get her treatment because her insurance company won’t pay, what’s the cost benefit of her skipping treatment or leaving her job? Would the savings achieved really benefit the entire pool of covered individuals? Or would those savings go directly into the pockets of the executives forcing those life or death decisions in the first place?

These aren’t easy questions, so there aren’t easy answers. And while it would be a mistake to characterize all insurance companies as money-hungry, heartless bastards, there does need to be an honest conversation and agreement about what, or WHO, the bottom line is all about.


Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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