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Interstitial pulmonary fibrosis

Lung Health | Last Active: Sep 2 9:03am | Replies (58)

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@vic83

Did you get the drug in the second half of 2024? I know Part D caps at $8000 out of pocket and drug price counts against getting there, but I noticed the calculation changed in second part of year when I run it through the Medicare site tool. And of course, OFEV (nintedanib) does not have a generic like SBRIET® (pirfenidone) so it is much more expensive.
That new Medicare Part D cap at $2000 is a real blessing. Finding help is impossible for many.
For great information go to the Pulmonary Fibrosis Foundaiton
https://www.pulmonaryfibrosis.org/
I would also add that it is important to see Pulmonologist who has subspecialty in interstitial lung disease/pulmonary fibrosis for best decision

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Replies to "Did you get the drug in the second half of 2024? I know Part D caps..."

My husband started taking Ofev beginning of 2023, and we had to pay $3300 +/- first month. As the retail price of Ofev is around $14,000 per month, we were well past the donut hole in the first month. During 2023 we paid almost $700 per month for the rest of the year. 5% of the total monthly cost of the drug.
In January 2024, we paid the $3300 again once, and then nothing for the rest of this year.
As I now understand, it will be $2000 in January 2025. Then nothing for the rest of the year.
Maybe because the actual cost of the med is so much, it put him past donut hole first month. ???
I think we have some great docs…was his GP who caught it early. Our pulmonologist is also well versed in IPF, and set us up with several people to go over the different meds, with her recommendation for Ofev. She has followed us ( my husband) constantly at first with blood tests, checkups and consultations. Now we are at 3-6 months, depending. He does not appear to have progressed 🙏 and was caught early. All of his doctors a pleased.
He is also not using any oxygen and is walking 1-2 miles a day, cooler weather x2, and playing golf 3-4 times a week. He is 77, and I’ve tried to keep us healthy…
He does take a nap after golf but has been like that forever.

To healthsnobw3, if you would prefer Ofev, check with your insurance company for next year, also call Medicare, number on your statement, and talk to them-so helpful for making decisions on cost.
Are you doing oxygen?
Happy weekend to all…love this site and all of you for support…