- This topic has 2 replies, 2 voices, and was last updated 4 months, 4 weeks ago by Ray Dingman.
January 9, 2023 at 1:06 pm #34069Ray DingmanParticipant
Just received a letter today from BI Cares Patient Assistance Program telling me that they are unable to enroll me in the program this year after being in the program since 2016.
Income is too high even though past 2 years they told me I was grandfathered in.
Any ideas on what I can do now? I was diagnosed with IPF in 2008.
January 10, 2023 at 7:37 am #34071Ray TownsendParticipant
If you were diagnosed in 2008 you are now fifteen years into your IPF journey and that’s good going! I was diagnosed in 2021 so I’m a mere novice compared to you but here is my attempt to answer your question.
I’m English and live in the UK where the rules are different. Here as long as you have lung capacity of lower than 80% and higher than 50% you can be prescribed Ofev free for as long as your lungs stay within that bracket. It’s a daft and heartless rule because if your lung capacity is over 80% you have to wait until your lungs permanently weaken before getting the medication and once you drop below 50% you are throw on the scrap heap. Because of this rule, although I was prescribed Ofev in 2021 and I’m still on it now, I decided to do some research into what I would do if I fall below 50% and lose access to the medication in the UK.
It seems that the Boehringer Ingelheim international patents last until at least 2024 (some last longer) so there is little chance of getting genuine generic Nintedanib in the UK or US anytime soon. However although I haven’t actually tried to do it, there does appear to be generic Nintedanib available for purchase in India at massively lower prices than elsewhere in the world – use Google to do a bit of research.
I wish you luck finding a supply of generic Nindedanib and I would suggest you have a capsule from your first delivery analysed to check that it is genuine.
January 10, 2023 at 6:11 pm #34078Judith Stryker-McGillParticipant
Try The Assistance Fund (TAF)
Phone: (855) 845-3663
Monday – Friday, 8 a.m. – 7 p.m. ET
January 11, 2023 at 7:07 am #34090Ray DingmanParticipant
I was able to get assistance through BI Cares because I have been grandfathered into the program. I have been on OFEV since 2016. Thanks for responses.
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