• OFEV cost and assistance

    Posted by john-eames on July 28, 2022 at 7:19 pm

    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

    mario replied 1 day, 13 hours ago 28 Members · 37 Replies
  • 37 Replies
  • ray-townsend

    Member
    July 29, 2022 at 7:53 am

    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with the details but this prompted me to do a bit of research into what I would do if my access to OFEV here was ever withdrawn.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.

    • ginabena

      Member
      September 16, 2022 at 8:22 am

      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

    • Bigjohn

      Member
      November 29, 2023 at 4:19 pm

      Hi ray I’m in the U.K. and was excepted for this treatment in September started taking the meds a week ago, I was diagnosed in 2020 . Been a struggle as I have Rheumatoid Arthritis as a secondary conidition. Was originally told I should get about 10 years well after 3 years I’ve been told now that with the new meds I might get 4 years as my lung function drop by 20% in 16 months to 52% overall now. Touch wood so far not had any of the side effects. Although I’m sure that won’t last. Just seems over here in the U.K. no one talks about it.?

      • mario

        Member
        February 20, 2024 at 3:02 pm

        Have you looked into Mark Cubans company CostPlus?

  • Millie

    Member
    July 29, 2022 at 10:40 am

    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

      Member
      July 29, 2022 at 7:09 pm

      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

      Member
      October 18, 2022 at 3:10 pm

      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.

    • harvey d lamothe

      Member
      August 15, 2023 at 4:37 pm

      John I am also on the Assistance fund (taking Esbert) and my co pay is $10. Open enrollment is in the fall so it would take effect in January

  • rtwboulder

    Member
    August 2, 2022 at 5:29 pm

    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

    Member
    September 9, 2022 at 4:31 pm

    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

    Member
    September 13, 2022 at 3:40 pm

    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.

  • kim-jacomo

    Member
    August 15, 2023 at 8:11 am

    Hi everyone,

    Are there any updates on finding OFEV?  I haven’t had any luck in receiving assistance.

    Thank you,

    Kim

  • wijay

    Member
    August 15, 2023 at 2:30 pm

    I believe Esbriet which is equally effective is now sold as generic at much lower cost. I am on Medicare and my monthly copay for OFEV is $680

    • sallie-weaver

      Member
      November 15, 2023 at 2:59 pm

      Can you tell me what Medicare supplement you have that you get your Ofev through?

      Thanks,

      Sallie

  • jross

    Member
    August 15, 2023 at 4:34 pm

    I have been a grateful recipient of financial assistance from the Healthwell Foundation this year and last. It has an annual cap but covers my OFEV cost under a Medicare drug plan through the first 9 months of the year.

    John

  • Vian.

    Member
    November 16, 2023 at 2:30 pm

    I have been talking Ofev for several years now . My pulmonologist rote me subscription for Ofev . And it cost me $60. Dollars for three months worth . Then I stared to get it at no cost to me . I would definitely check with your pulmonologist and see what he / she can do for you

  • terrig

    Member
    November 16, 2023 at 2:50 pm

    I got assistance through Open Door, which pays for all of it. I don’t pay anything. I work FT and am on my husband’s medical insurance. I was surprised I got it for free. I don’t know how long that will last. I was paying $85/month with my insurance.

  • david-bennett

    Member
    November 16, 2023 at 5:19 pm

    You might want different insurance. My copay was about $600/month 3 years ago before I was accepted by BIcares. The full price was about $1100 or $1200/month then. Have no idea what it is now, but it is hard to believe that it has gone up enough in 3 years to make the copay double what the med used to cost. I will be in real trouble if I’m not accepted by BIcares for 2024.

    • david-bennett

      Member
      November 17, 2023 at 4:12 pm

      I just checked current prices for Ofev and Esbriet with my Anthem Advantage and GoodRx. I couldn’t believe my Ofev copay in 2024 would be a bit over $2000/month if I’m not accepted by BICares. GoodRx’s non-insurance price is about $12,000/month. Esbriet generic is as low as $465/month without insurance, about the same as the copay. It’s less convenient than Ofev, 3 capsules 3 times a day, but $1500/month will have me talking to my pulmonologist if I don’t make the BI cut next year. UHC is a lot cheaper than Anthem, but my docs and some facilities aren’t covered and could make PFT’s and HRCT’s pretty pricey.

      • KTB

        Member
        February 17, 2024 at 7:56 pm

        Do you know why certain people are not making the Bicares cut for Ofev in 2024? My dad was approved in August of 2023 and is on it, but it now looks like there may be trouble getting Bicares to cover it for him in 2024. Any information you have would be helpful.

  • mkumlander

    Member
    November 16, 2023 at 11:28 pm

    Look into Open Doors they have helped me and amazing support!!! https://www.ofev.com/support/open-doors

    • KTB

      Member
      February 17, 2024 at 8:00 pm

      My dad has been helped out with Bicares for Ofev starting in August of 2023, but there’s uncertainty right now for 2024. Do you know the main difference between Bicares and Opendoors?

  • linda-maguire

    Member
    November 17, 2023 at 1:46 pm

    It is currently “open season” in the U.S., which is the time you can choose your Part D Medicare drug plan for the next year. Do the research to find which insurance has the most coverage for whatever medications you are taking, as they vary significantly! I believe Ofev is a Tier 5 drug, which means that it is very expensive (over $100,000 per year).

    Although it won’t solve the immediate problem, also consider writing to your Senators & Congressmen/women about the need to regulate the high cost of prescription drugs, especially those that are lifesaving!

  • GRK

    Member
    November 29, 2023 at 9:15 am

    I have a friend who is a pharma executive in Canada. He shared this info with me…”I found two reputable Indian companys that have launched generic Nintedanib 100 and 150mg capsules in India. The first is Cipla which lists its price at RS 69 and RS 85 for the two strengths respectively. That’s about $1.00 USD for the 150mg and $0.85 for the 100mg”. This site below shows Cipla for a generic equivalent that is made in an FDA-approved fractory and guarantees delivery in 4 to 9 days. https://fixrx.com/shop/respiratory/buy-nintedanib-generic-ofev-vargatef/.

    Here is the Glenmark site… https://glenmarkpharma.com/#

    My friend is also checking with some of his Indian contacts to see if he can get any additional info.

    • terrig

      Member
      November 30, 2023 at 2:12 pm

      I’d be really careful about purchasing Ofev outside of the US. Personally, I would not do it. There is NO generic Ofev anywhere – that’s why it costs so much. Ofev patients and insurance companies are paying for all the R&D on the drug, and there’s a lengthy process for getting a generic drug approved and into the market. I understand that a brand-name drug must be in the market for 7-10 years before a generic can be approved. The drug company has to make sure it works first before they can allow a generic to be made.

      • GRK

        Member
        December 5, 2023 at 2:38 pm

        As I mentioned in my comments, yes, there are legitimate OFEV generics in India with reputable companies. Please read my original comments. I got this info from a retired pharma CEO who I trust. Thanks GRK

  • IbizaDan

    Member
    November 30, 2023 at 3:46 pm

    i have had IPF for 2.5 years. through my insurance there is an assistance card to help offset the cost of OFEV. there is also a foundation created by Boehringer Ingelheim pharma patient assistance to assist in the costs see the link below. here is the 800 number >>> 866-673-6366

    https://www.ofev.com/financial-assistance?

  • IbizaDan

    Member
    November 30, 2023 at 3:47 pm
    • If you have commercial insurance, you will have the opportunity to enroll in the OFEV Copay Program. The Specialty Pharmacy will enroll you in the program and provide a status on your eligibility.
    • If you are covered by any form of government-funded healthcare programs (Medicare, Medicaid, TRICARE, VA, etc.), you are not eligible for the program. Also, if you are paying cash, you will not be eligible.
    • If you are eligible, you may receive OFEV for as little as $0 per month. There is no card to carry or worry about.
    • Please see full terms and conditions.

    Remember—OFEV is available only through a Specialty Pharmacy that specializes in rare diseases and the medicines used to treat them. They can help:

    • Arrange for financial support if you are eligible
    • Explore potential insurance benefit options
    • Coordinate delivery of your medicine
    • Offer refill assistance
  • IbizaDan

    Member
    November 30, 2023 at 3:49 pm

    Additionally, if you have commercial pharmacy insurance, there is nothing for you to fill out. Your doctor simply provides your Specialty Pharmacy with the information they need. They take it from there. Be sure to ask your Specialty Pharmacy or the OPEN DOORS® Patient Support Program care team about the following financial support options, and which may be best for you.

  • miked

    Member
    November 30, 2023 at 7:41 pm

    Hello, I get my copay covered by The Assistance Fund – https://tafcares.org/ . They provide assistance for rare diseases, they include pulmonary fibrosis in their covered diseases. I found it seamless and easy and they are very helpful when contacted. They cover all copays after my insurance pays their portion. My speciality pharmacy has their copay code and I pay nothing.

    Best of luck to you! Michael

  • neha

    Member
    December 3, 2023 at 12:54 am

    Hello,

    Here is a link to a blog on the Pulmonary Fibrosis NOW! website that has patient recommended resources to help with medication costs – tips shared by our community members, hope this helps: https://pulmonaryfibrosisnow.org/2022/12/30/how-to-access-affordable-pf-prescription-medications/

  • Honey

    Member
    December 5, 2023 at 2:50 pm

    We have been assisted by Open Doors Patient Support Program (866)-673-6366. You can find out more about the program at ofev.com.

  • RedBanker

    Member
    February 5, 2024 at 10:18 am

    I started OFEV in Jan 2024. My experience is that I was not eligible for assistance with copay from any funder or BI. I have been told that the max income for help with pay is now, for 2024, in USA approx $75000 where last year it was $125000. Last year OFEV would have cost me $12000 for the year. Last two months of yer would had been $4000.

    For 2024 Medicare has reduced the max out-of-pocket (OOP) to $3300 for Part D and $8-9K for the insurance co. For 2025 the max OOP will be $2K. I paid $3333.02 for my Jan 2024 OFEV. I paid $0 for Feb 2024 OFEV and will pay $0 for OFEV and my other prescriptions for the rest of the year.

    • KTB

      Member
      February 17, 2024 at 8:15 pm

      Thank you for this information. I relayed this to my dad, who has IPF and takes Ofev. He has been on Ofev since August 2023 and Bicares helped out, but right now there is some uncertainty for 2024.

  • pete-besio

    Member
    February 6, 2024 at 3:21 pm

    This is my opinion, and shared by my pulmonologist. The efficacy of OFEV and Esbriet is marginal at best. We chose Esbriet as my treatment medication. Esbriet. Has games a generic form for about a year, which I switched to immediately. Great savings! Then Mark Cuban started his CostPlusDrugs. I am now getting my generic Esbriet through that pharmacy. My cost: $199 for 90 tablets, 801mg. A couple of years ago I paid about $6000 for that same amount. I used to defend Big Pharma. Not anymore. If I were an OFEV user and worried about the cost, I would ask my doc to switch my prescription.

    Pete Besio

    • KTB

      Member
      February 17, 2024 at 8:19 pm

      My dad was specifically prescribed Ofev over Esbriet because of his skin–he has fair skin. Have you heard of any people who have switched from Ofev to Esbriet and had no problems doing so?

  • john-fraze

    Member
    February 8, 2024 at 7:53 pm

    Open Doors has a cost support program as indicated in a previous reply. I have found it useful. 866 673 6366.

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