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Interstitial pulmonary fibrosis

Lung Health | Last Active: Sep 2, 2024 | Replies (58)

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@ch47

@vic83,
I am so sorry that you are working on several lung issues…one is seriously enough…
Please call Medicare and talk to them-they are really nice and helpful.
When “we” were diagnosed late 2022, all I did was research and take notes and stress. My husband was just in denial and refusal. The money was a huge part.
Convincing him that “we” were worth it was tough.
Medicare held my hand numerous times. I kept calling because I couldn’t believe that 2024 was “only” going to be the $3300 or so, and nothing else after, during this year. Any other meds were all covered because he had met his max for the year. No one ever mentioned $8000…? However, we did spend over $8000 last year for Ofev overall for the year.
Ofev is a specialty pharmacy medication-I think there are 8 pharmacies in the country that provide it. (If I remember right) They ship in an ice pack. And will overnight if you are running low. You are lucky to have a pharmacist that will talk to you about it!
Please touch base with any questions; and let me know how your Medicare chat goes-like I said, I called numerous times to make sure they were all on the same page. Wish you well with your new treatment plan 🙏

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Replies to "@vic83, I am so sorry that you are working on several lung issues…one is seriously enough…..."

Thanks for your concern. The Specialist in interstitial pulmonary fibrosis did not see the risk benefit since I was currently stable and put me on O2 instead. So, for the moment I am not on an anti-fibrotic. I did research it while I was waiting for my appointment, so I knew the cost. When you say you did spend over $8000 last year, that is in line with what I was told. Total out of pocket cost for all drugs one takes capped at $8000. Next year it will be down to $2000. Great news because antifibrotic drugs are required for life.
Unfortunately, because of the fibrosis, any further treatment for my multifocal cancer has to be carefully considered as the risk to severely reduce my quality of life is very high.