Hitting a Nerve

The struggle for insurance coverage


Mr. Jones has had multiple sclerosis (MS) since 2008. Initially it was pretty active, though I was able to bring it under control with drug A. He didn’t like the side effects, or the shots, but at that time options for MS treatment were kind of limited.

When the oral agents came out he switched to drug B. He still had some side effects on it, which he didn’t like, but his insurance didn’t cover the other oral agent that was available. So he soldiered on.

Dr. Allan M. Block, a neurologist is Scottsdale, Ariz.

Dr. Allan M. Block

Then, in late 2019, he had an episode of optic neuritis, and a repeat MRI showed that in the last 2 years he’d had an uptick in demyelinating plaques. So, in early 2020, he switched to drug C.

Drug C has, to date, been pretty good. He’s had no side effects or relapses, and a recent brain MRI was stable.

Of course, drug C ain’t cheap. Its price isn’t even listed on ePocrates or GoodRx. So my staff and I have to do all kinds of paperwork and hoop-jumping to get it covered each year.

So in late 2021 we started the annual process, which doesn’t happen overnight. We finally received notice he’d been approved – until March 1, 2022. Only 3 months.

Given the alacrity with which these companies seem to work, we began the new authorization paperwork almost as soon as we got the last one in mid-January. This time we didn’t hear back, and every time we called they told us the application was “under review.” In the meantime, Mr. Jones’ supply of pills, which are pretty critical to his health and well-being, was gradually decreasing.

Recently, out of the blue, a 1-month supply of drug C showed up in his mailbox, along with a bill for $3,000. Mr. Jones is a career waiter at a local restaurant, and had no way to pay for this. So my staff went to work on the phones, and after a few hours got it in writing that it was being covered as a bridging supply under the manufacturer’s assistance program. Okay. That crises was averted. (I have no idea if the insurance really pays $3,000/month. Like buying a car, there can be a big difference between a drug’s asking price and what’s really paid for it).

The next morning, however, we got a note from his insurance company saying the medical reviewer had decided he didn’t need drug C, and wanted him to go back to drug B. After all, it was cheaper. I called the reviewer and argued with him. I told him he’d clinically worsened on drug B, not to mention the side effects. The reviewer said I should have mentioned that in my notes. I pointed out that it was in my notes, which had been sent along with the forms I’d filled out. He didn’t answer that, just said he’d have them fax me an appeal form.

The appeal form showed up about an hour later, so I took some time out of my weekend to fill it out. Then I faxed it back, along with (as they requested) chart notes and MRI reports dating back to 2008. Which was a lot.

So now we’ll see what happens.

Do other countries have this sort of thing? Or is this a product of the bizarre patchwork that makes up the American health care system? Different insurance companies, different subplans, and regional sub-subplans, and so on, each with a different set of rules, forms, and obstacle courses to navigate.

For all their glitzy TV commercials showing smiling, happy, multigenerational families, all looking to be in glowing health from the medical care they’re receiving, they seem to be pretty determined to keep Mr. Jones from receiving a drug that’s allowing him to continue working as a waiter 50-60 hours per week. Without it, he’d likely be unable to work and, at some point, would have to file for disability. Probably would eventually need increasingly high-cost items, going to a cane, then a walker, then a wheelchair, then a power wheelchair. ER visits, things that. In the long run, those would cost a helluva lot more than drug C.

Of course, that may be part of their game, too. Maybe they figure he’ll end up dropping off their insurance as he worsens, and then their shareholders don’t have to pay for his bad luck. I hope I’m wrong in thinking that, but such is the nature of business. And health insurance is a HUGE business.

So now I’ve faxed in the appeal forms, and can move on, for the time being, to the needs of other patients (not to mention spending time with my family). But Mr. Jones’ pill supply will run out on April 1, 2022, and I still have no idea what will happen then.

Neither does he. And for him, that’s pretty scary.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.

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