Challenges of Chronic Fibrosing ILD With Progressive Phenotype

Roadblocks to the management of chronic fibrosing interstitial lung disease with progressive phenotype, including firsthand patient experience.


Neil B. Minkoff, MD: Ms Repola, one of the things that we’ve touched on has been the way clinicians have access to medications. What therapies are you on and have you had concerns with? Have you had concerns about coverage? And how has that affected your current treatments?

Dawn Repola: In 2017, I closed my businesses after I got further along in my diagnosis, and because of that I no longer had access to COBRA [insurance coverage]. I had to go into our state marketplace for health care. Having a diagnosis of ILD [interstitial lung disease] mattered when we were looking for health care coverage. I feel fortunate that I live where I do, because we’re pretty progressive in Colorado, in terms of coverage. But it’s quite expensive. Getting my medications has not been that big of a deal. I take an immunosuppressant. It’s a generic; it is available. I did run into a situation where we changed health insurers this year, and the cost at the specialty pharmacy went from $87 dollars a month to $675 dollars a month. I went to GoodRx, and I was able to find an alternative there.

One really bad experience that I have had with coverage was around access to oxygen, which I think is fascinating for people who can’t breathe. My payer managed to find a way to not reimburse me for my portable oxygen concentrator. This was one of those questions I asked on the closed Facebook groups and found that it was quite common. If you decided that you were going to make a purchase, you wouldn’t be reimbursed for the purchase. But if you continued to rent from one of the DME [durable medical equipment] companies, that would be covered. Except the problem is their deductibles are so high that it’s not truly covered, it just continues to be an expense. I fought with the insurance company for over a year, and then I finally gave up. Every person that I talked to at that insurance company told me that it should have been covered at 100%. But at the end of the day, they just didn’t pay it. That was disappointing. And I thought, with my background in both health care and business, and being high functioning, I can’t imagine what it’s like for other patients to have to go through this and to have to fight that fight.

Neil B. Minkoff, MD: I’m going to continue on with this, you said you’re on an immunosuppressant. How is that affecting your quality of life now?

Dawn Repola: I’ve learned to live with it. There are a few [adverse] effects, but I know what they are, and I’ve learned to manage them. That’s not that big of a deal. When I first started on it, it was a much bigger deal for me. And it was uncomfortable, which caused me to stop for about a year, and that’s when I had an exacerbation. I’m pretty clear that staying on the immunosuppressants is really important.

Neil B. Minkoff, MD: As we transition into the challenges of treating the disease and the unmet needs, I’m going to continue with you for a second, please. When people are coming to learn from this session, what would you like to share with them about how this disease has impacted you in terms of your overall lifestyle, how it affected you? You mentioned your businesses and so on.

Dawn Repola: The biggest impact was that it completely changed my lifestyle. I just did an examination and said, what’s working and what’s not? As a result of that, I closed my businesses. I’m doing other things now. In terms of my level of activity, it has definitely dropped off. When I go to altitude, my oxygen needs are much greater. I didn’t realize this, and I climbed Mount Evans with a couple of girlfriends one weekend, and that was a complete and utter disaster. I will never do that again. Those are the kinds of things.

I don’t count it as all bad, because my relationship with my husband, we’ve been married 25 years. We always knew we were in it for life. But this is one of those moments where you get to find out what your partner’s made out of, and he’s been amazing. He’s my caregiver. The other part of it is, the not knowing and the lack of information because it’s a rare disease, is one of the more difficult things that I have had to deal with. Because it also has made me doubt myself, like, are you really sick? And do you really have to take all these precautions, and that kind of thing? I would love to see a lot more information for patients and have it be easier to find, and more widely available.

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