OFEV cost and assistance

[John Eames]

Any suggestions on paying for OFEV? Diagnosed in Feb. 2022 with IPF, Insurance wants $3000.08/Mth copay for OFEV. Have applied to the BI Cares program and was rejected. Have looked at offshore suppliers and found 1800Rx with a price of $1300/Mth. Does anyone have any experiance with 1800Rx or other offshore suppliers i.e. Canada. Thanks

[Ray Townsend]

Hi John – sorry to hear about your diagnosis.  I’m a year ahead of you as I was diagnosed in Feb 2021.

I live in the UK and here OFEV is free so I don’t have your difficult affordability problems.  However in the UK this medication is supplied by our health service with ‘strings attached’.  I won’t bore you with the details but this prompted me to do a bit of research into what I would do if my access to OFEV here was ever withdrawn.

The first thing to say is that depending on where in the world you are looking, you often find this med under its ingredient name – Nintedanib so get used to using both names in any Google searches you do.

The cheapest place to get OFEV/Nintedanib seems to be India where it is massively cheaper than the US but of course the problem is how do you know if the product you receive is genuine – particularly as the med only slows down the progression of IPF so you are unlikely to be able to accurately judge efficacy.

If I ever need it, this is what I have decided to do (this is only my opinion):

1. Get a prescription for OFEV.

2. Find a reputable  Indian supplier.  Here is a POSSIBLE one to look at:  https://www.gnhindia.com/products/canada-drug-din/ofev-boehringer-ingelheim-canada-ltd-ltee-92761/ but do your own research.

3. If the price is good and the process looks genuine, order a month’s supply.

4. Pay to have the OFEV analysed in the US. (It will be generic Nitedanib but the composition should be the same).

5.  If all is well then you have a way to get OFEV without selling your house!

If you get any luck with this then please post your experiences back to the forum as it might help others.

Good luck and best regards,

Ray T

Ps. I’ve been on OFEV for over a year now and thankfully I do not have any of the nasty side effects and my IPF appears to be stable.  I live in hope that one of the new meds in stage 2 & 3 trials will give us all more hope for the future.

[Gina]

Hi John?

I was diagnosed last year and was turned down multiple times for help. I finally found “The Assistance Fund” (tafcares.org) and was accepted after a short time on their waitlist. They pay the balance after insurance. Hope this helps. Good luck

[Millie]

My pulmonologist handled the RX for me. I had to provide him with a copy of my latest Federal tax return and he included that with a RX for OFIV. I was approved to get it free. I was very surprised because my income is quite high, I think. I would ask my pulmonologist to do this if I were you.

[John Eames]

Hi Ray

Thanks for the great information. I will follow up with the India lead and see what happens.

It is unconscionable to charge $3000/month for a life saving drug.

Will let you know the progress.

Thans Again

John

[John Eames]

Hi Gina

Thanks for the information. I have not pursued any other avenues re:OFEV cost/payment since my application was denied. Now Open door keeps calling me to re-apply. Don’t know if I want to go on OFEV after reading the side effects. Think I will just monitor the pulmonary function test and see what happens.

[Rosemary]

I would encourage you to check out the assistance provided by Healthwell Foundation. They offer grants in a variety of categories and their staff is very helpful.

[Ned]

I am new to the med search. I am ordering OFEV meds-100mg. I found a Canadian Pharmacy (Northwest) that sells the med for $936.29 (60 tabs.) The med is shipped from Turkey and will take a least two weeks to reach me. Not pleased to get the med from Turkey but I have a pharmacist friend who tells me that BI has a manufacturing plant there. The process is not easy . I have a $6,000 award from Accessia but Northwest does not process their paperwork. I must front the money and then turn in a claim to Accessia to get reimbursed up the the limit of my award. Like a few of the responders, I have been turned down for assistance from BI Cares, CVS and OPTUM RX. I applied to several other organizations suggested by OPEN Doors with only Accessia granting my some assistance. I am looking for some suggestions? Ned

[Bonnie Thompson]

I also would suggest checking with Healthwell Foundation regarding the availability of grants. You can find them on the internet.  There may also be other foundations with grants but I know this one is very helpful.

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