Progressive Phenotype ILD: Insurance Coverage

Insurance coverage concerns and difficulties while seeking care for chronic fibrosing ILD with progressive phenotype.

Insurance coverage concerns and difficulties while seeking care for chronic fibrosing ILD with progressive phenotype.


Dawn Repola: During my journey, a couple of things have happened. One of the reassessments I made had me close my businesses, and because of that I lost access to health insurance. Then I had to go into the marketplace to buy health insurance. I am very appreciative that I live in Colorado, where we have a progressive view about the marketplace.

We have a progressive governor, and we’ve done some things here to help mitigate the cost of that, but buying your own health insurance is quite expensive, and being an individual in the marketplace is an expensive proposition. I was grateful to find a good broker and grateful to live where I do.

I had a terrible experience with coverage for my portable oxygen concentrator. It ended up being a protracted battle with the insurance company for a year.

This was a benefit that I had called about, and they told me it would be 100% covered. I made the purchase. I submitted it for reimbursement, and then they told me they weren’t going to reimburse me for it. I battled with them for a year, and finally I gave up. I even brought in a regulatory agency here and had them try to help me with it. I’m someone who has a background in business and in health care, and I’m pretty high functioning and can have a cogent conversation. But if that can happen to me, it can happen to anybody. I have a really hard time understanding what drives that decision when all the people I talked to at the insurance company told me that this should have been a benefit that was covered 100%.

That was really disappointing. The other thing that happened around coverage was I switched insurers this year—the specialty pharmacy isn’t new to me—and my medications, which are generic, went from being $87 to around $675 a month. I went on GoodRx and looked for a better price and found that. It’s more convenient to get it from my local pharmacy, but that didn’t track for me. That didn’t make sense to me why there was that big of a discrepancy in price.

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