February 16, 2021 at 3:24 pm #27313Byron VogelParticipant
I was diagnosed with IPF in 2017 and using 100mg of OFEV twice daily. I have been advised I am no longer
elgible for Ofev assistance program. Now wonderng if anyone has had success purchasing the product direct from India.
Would appreciate any information. Really appreciate the News letter and other participants input.
February 26, 2021 at 7:50 am #27502Mark BowdenParticipant
Hello, Byron – I recently was prescribedOfev and am also interested in foreign sources for this highly expensive medicine. I see online that an India pharmaceutical co. has its on version of nintedanib. I don’t know there is much difference in price. Still exploring. Meanwhile, what happened that you are no longer eligible for assistance? I am looking into assistance, but wonder what good that will do me if I’m cut off down the road. Any insight appreciated. Thank you, Mark B
- This reply was modified 1 year, 3 months ago by Charlene Marshall. Reason: tagging
April 29, 2021 at 5:08 pm #28198MarkParticipant
I am supposed to start on this med soon. Does it work well? My doctor said that I will need a transplant at some point soon.I hope that this will buy me some time. Thanks for the input.
May 1, 2021 at 9:42 am #28208Charlene MarshallKeymaster
Thanks so much for writing us about Ofev. Have you started it yet and how is it going? I was on this drug too and was really discouraged at first due to the GI side effects. I had to go off it twice and then titrate back onto it, starting at 100mg twice daily and then going back up to 150mg twice daily before I could tolerate it. It was tough, but I was able to get it and believe it has helped. I also carry the Imodium *sublingual* tablets everywhere with me! These dissolve under your tongue – no water needed – and I find them so much more effective in combating any GI issues than the oral tablets. Not sure if this helps?
May 4, 2021 at 2:59 pm #28215Jim ParsonsParticipant
I checked the price of OFEV from India and the full price is less than the co-pay I am paying in the US. My concern is in shipping. During the summer the specialty pharmacy sends it in an insulated container with ice packs. I am sure it would not get the same care coming from India.
May 4, 2021 at 5:08 pm #28216Bruce HawnParticipant
My understanding is that you lose your eligibility to participate in their co-pay program, once you go from private insurance to Medicare. Have to be privately insured. Not sure why, but am sure that is one of the ways, maybe only way, you lose eligibility for the OFEV copay program, other than cancellation of the entire program.
June 30, 2021 at 12:19 pm #29069Brenda BowmanParticipant
I am on Medicare, I started out on a grant that expired a couple of months ago. I have been on Ofev since last August.
They recommended I contact the company that makes Ofev and I qualified to be on there program. I do not have a copay and just have to reapply every year.
I did have to send in a copy of my tax return from last year with my application but they didn’t mention what the income level is to qualify.
I hope this information helps.
November 6, 2021 at 3:18 pm #30381Paul B ~ LakelandParticipant
Hi Bruce, I started Ofev 2 months ago. I am 69 years old so I’m on Medicare thru United Healthcare. AARP Medicare Advantage Focus. I applied for the BI (maker) grant, but was declined as we are over the income limit. Bottom line – $2,700 for first month, then $600 every month thereafter out-of-pocket. Hope this helps. Paul B – Lakeland
July 1, 2021 at 11:34 pm #29089Edward ElliotParticipant
Thanks for the tip re: sub-lingual loperamide aka Imodium. I’m gonna give it a try.
July 5, 2021 at 5:34 pm #29107DiParticipant
My dads been on Ofev 2weeks now 2 tablets a day was making him physically sick if he didn’t eat enough food. Trying him on one a day at the minute, he’s really struggling at the minute, so hope these tablets work for him.
We’re in the UK so no charge for medication We’re so lucky to have the NHS
July 6, 2021 at 5:14 pm #29118
January 10, 2022 at 10:44 am #30712Kay RobertsonParticipant
I have been on Cellcept and Ofev for last 4 months. I am a 76 y/o widow and also denied Ofev assistance based on income. I am on Aetna Medicare Advantage and as I am sure you know the prescription plans are reset yearly every January. My copay is 1st month $4,127,57, 2nd month $3,429.38 and then next 10 months $625.9 per month. If your copay stayed the same it is a much better plan than mine so I will have to check it out this year.
Thank you so much,
January 13, 2022 at 2:15 am #30736Virginia CurrieParticipant
I was prescribed ofev but my insurance denied it. I. Trying the assistance program. If they require a copay, I don’t think I can afford it. I was referred to Humana. I have a chronic fibrotic hypersensitivity pneumonitis and went more short of breath after this disease was found in a lung biopsy. I’m still working for the medical insurance. So help me God! I don’t like the lung transplant.
January 13, 2022 at 2:17 am #30737Virginia CurrieParticipant
I was prescribed ofev but my insurance denied it. I am Trying the assistance program. If they require a copay, I don’t think I can afford it. I was referred to Humana. I have a chronic fibrotic hypersensitivity pneumonitis and went more short of breath after this disease was found in a lung biopsy. I’m still working for the medical insurance. So help me God! I don’t like the lung transplant.
January 13, 2022 at 4:29 pm #30743Mary Jane WallaceParticipant
Bryon where do you live?
January 13, 2022 at 9:28 pm #30747Bill SParticipant
I am starting my second year on Ofev 150 mg. The first year I was granted coverage by Boehringer Ingelheim (BI Pharmacy) itself with no copay. When I reapplied for 2022 coverage I was denied for excessive income?? Less than the qualifying year. It was suggested I try The Assistance Fund which approved me for 2022 with a monthly copay of $10.00. They have not asked for my tax return as BI did. It seems there are several charitable funds but not all participate with IPF and have different income levels to qualify.
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