Interstitial pulmonary fibrosis

Thank you so much for sharing these ideas…last year was really tough and we had to pay the whole amount for first month (put us past the donut hole) and then almost $700 a month for the rest of the year. Like you, I checked every financial aid place, but we were over the limit. It really put a hole in our pocket, but worth it.
This year we just (just???) had to pay to get past the donut hole, what is that, like $3300? no charge for the rest of the year. He takes Ofev and seems to be doing well.
Next year, I believe it is $2000 first month and then nothing for the remainder of the year.
🙏
I hope that you are doing well on your medication and that you continue to do well!
Please share if you have anything else …

Yes, next year this is an important change to Medicare and the max out of pocket cost for Part D drugs will be $2000. This year it was $8000. So that is really good news for people who need expensive Tier 5 drugs!
I almost got put on this anti-fibrotic, but I did Consult with Specialist who said my pulmonary fibrosis was stable for the moment and didn't see the risk benefit of the drug and instead put me on oxygen for exertion and night sleep. Medicare covers the O2 also.

Great that you were able to avoid the meds and the expense!!! And that you are stable 😁
My husband’s part D capped at 3,000+ out of pocket. It seems that the overall cost of the drug gets applied to reaching the donut hole…at least in his case.
Thank you for sharing/confirming the “only “ 2,000 for next year.
Stay well!!

Thank you so much for sharing these ideas…last year was really tough and we had to pay the whole amount for first month (put us past the donut hole) and then almost $700 a month for the rest of the year. Like you, I checked every financial aid place, but we were over the limit. It really put a hole in our pocket, but worth it.
This year we just (just???) had to pay to get past the donut hole, what is that, like $3300? no charge for the rest of the year. He takes Ofev and seems to be doing well.
Next year, I believe it is $2000 first month and then nothing for the remainder of the year.
🙏
I hope that you are doing well on your medication and that you continue to do well!
Please share if you have anything else …

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

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…

I checked with my pharmacy too and Olev retail was like $14,000 for one month. Esbriet has a generic and was "only" a couple of hundred dollars a month. I understood that out of pocket expenses were capped at $8000/year for all drugs and the Medicare tool says everything would be at no cost after one spends that amount. Glad it will be simpler AND CHEAPER next year. I have multiple lung issues so I saw a second pulmonologist to consider if one of the two antifibrotic drugs would be more indicated for me.

@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 🙏