Tagged: Jim Williamson
- This topic has 27 replies, 21 voices, and was last updated 1 month, 1 week ago by GratefulDeb.
February 7, 2023 at 9:16 am #34321
Hello everyone. I hope this finds you feeling well today and most importantly, happy. I have PF and have been symptomatic since 2008. Yes, 2008. I’ve been seen by pulmonologists all over….Cleveland Clinic, Temple Lung Institute, Johns Hopkins and now UMiami Health. I am scheduled for a biopsy next week. Because my lungs are so fibrotic a transplant surgeon will be doing the biopsy as opposed to a cardio-thoracic surgeon. I’ve been on oxygen 24/7 since September 2022. I will be 58 years old in a few weeks and have enjoyed a life full of many, many adventures and lots of activity. I now find myself tethered to oxygen BUT with my sense of humor still intact, gratefully. I live on an island in the U.S. Virgin Islands and used to hike, swim, socialize, etc., etc. regularly. I have gone from 150 mph/day to 5 mph/day. I do not even look like the person who once enjoyed good health. Fortunately, I can still work and I work remotely as a Paralegal which I do enjoy. I am on Medicare and my pulmonologist wants me to try Ofev. Medicare denied it so I figured I would just pay for the drug out of pocket UNTIL I found out it would be around $12,000/month. I am appealing Medicare’s decision. How can they deny me a life prolonging medication for an illness I’ve had for sooooooo many years? I am floored and upset. I am unafraid and prepared for the inevitable but really hoped that this medication would give me more time. So my question to you all is this: Are there any programs that would help or supplement the cost of this drug so that I might be able to give it a try?????
Thank you for reading this and I am so grateful for having found these forums and look forward to actively participating and perhaps even helping anyone who suffers from this.
February 7, 2023 at 2:14 pm #34326Phil SasserParticipant
The manufacturer, Boehringer Ingleheim, has a patient assistance program. Your pulmonologist should get you their contact information. B-I supplies all of my Ofev at no charge. You have to fill out some paperwork, but they’ve been good to me. Blessings to you as you deal with this disease and the associated side effects of the medication.
February 9, 2023 at 5:04 pm #34375harvey d lamotheParticipant
I’m on a program called ‘The Assistance Fund” which helps on your copays. their phone no. is 855-220-1792. you might call them to see if you qualify.
February 7, 2023 at 2:19 pm #34327Mike CaseyParticipant
As Phil said you can contact BI Cares to receive the medication at no cost provided you do not exceed the earnings limit. I am on Medicare and do not pay for my OFEV.
Best wishes, Mike
February 7, 2023 at 2:20 pm #34328Duncan FowlerParticipant
I just signed in and saw Phil’s comments to you.
He is right on! Please give them a call. Try:
“Call OPEN DOORS at <span class=”white text-decoration-none text-nowrap”>1-866-OPENDOOR</span> (1-866-673-6366) to learn more about your OFEV prescription and what financial support options may be available to you.”
February 7, 2023 at 2:22 pm #34329CharlesParticipant
Try Boehringer Ingelheim They have a “BI Cares Patient Assistance Program” for OFEV. PO BOX 5637 Louisville KY 40255. Phone number is 1 855 297 5906 or fax number 1 855 297 5907. They are great people there. I have been on their program for years. Just need to renew annually. I am on social Security and qualify for the OFEV at no charge. Hopefully they can do you some good. Chuck
February 7, 2023 at 2:22 pm #34330Karen BowenParticipant
Hi GreatfulDeb….. I went thru Boehringer Ingelheim for OFEV, filled out the financial aid info & I got it for free. I’ve Medicare & BCBS. Boehringer was a much quicker turnaround than dealing with Genetech (who tried to block Sandoz from developing & making the generic Esbriet).
You do need to go thru your Doctor. They took the paperwork & submitted it for me. Took all but 2 weeks. The form is on their site. If you’ve a proactive Doctor, he’ll push it thru, mine did.
Best of luck! I’ve been on it for almost 3 months now & no ill effects – Karen
February 7, 2023 at 9:10 pm #34357Marilyn CellucciParticipant
I am just starting Ofev. I was sure I would be turned down by Medicare/drug program and then have to appeal. I was pleasantly surprised. My insurance company approved it right away! I must have a great Medicare plan. I am so fortunate. I just pay a $30 co-pay each month.
Another drug that I am on though, my insurance turned it down. It is also very expensive. I applied to BI and now get it for free.
February 7, 2023 at 2:23 pm #34331Gary CrossonParticipant
Yes BI does have an assistance program but it runs from Jan. to Dec. and you have to apply before the end of the year. In the meantime there are foundations that can help you. One is HEALTHWELL FOUNDATION. I got assistance thru them when I first started Ofev and then I went on Boehringer Ingelheim assistance. Healthwell gave out $9000 grants. By the way all this goes by income requirements. Hope this is helpful.
February 7, 2023 at 2:27 pm #34332DaveParticipant
Hi Deb, my name is David I too have PF was diagnosed in 2020 and I’m on OFEV.
my Dr helped me out getting me the OFEV thru a foundation. there are 2 that I have used.
one is the Patient Advocate Foundation, and the other is Health well Foundation. they cover a most the cost for the OFEV. you might want to give them a call to see if you.
qualify, and your Ins. would cover the rest. here are the numbers to contact.
Patient Advocate 866-512-3861, and Health Well 800-675-8416
hope it works out for you. I’m on my 3rd year of using both.
February 7, 2023 at 2:41 pm #34333DonnaParticipant
Hi, I was on Pirfeni could not even get 1/2 way up getting through to the level needed in Esbriet the side effects plus currents issues I have just couldn’t do the Pirfenidone.
it has been a month the Dr. is letting me decide if I want to give OFEV a try. He said I do not fit into any clinical trials with my condition. I am not quite sure what that means.
I have tried to give this a lot of thought what to do and my decision. So afraid of the repeat of the Pirfenidone. I told the Dr. If there was no clinical trial soon I would go on the OFEV. I have already gotten partial support thru my pharmacy and hope to find additional. So hope it goes better..
February 7, 2023 at 2:52 pm #34334James WilliamsonParticipant
Phil and Deb,
About one year after I was diagnosed with IPF, I was offered free OFEV from Boehringer Inglehelm. I used it for about six weeks but the side effects were super bad for me.
My lower gut was angry with constant pain. I had to remain within 20 feet of a bathroom at all times. Even at 20 feet, sometimes I didn’t make it. Driving to the a store or going to a movie was not possible. I thought I gave it a fair try but my quality of life was hanging around zero. It’s good some people can tolerate it
February 9, 2023 at 4:20 pm #34373Phil SasserParticipant
I had a similar experience the first time I took it in the fall/winter of 2020/2021 so I discontinued the Ofev. Then last September a high-res ct scan showed more loss in my upper right lobe so I started up again. The side-effects you mention are still there but I am sticking it out. I am careful about when I take it, what I eat with it, and careful in my use of Immodium. It gives me 3-4 good days and a 1 1/2 tough days. I will endure that if it gives me more time with my family. And I try to not let it steal my joy. May God bless you on this unexpected journey.
February 7, 2023 at 3:16 pm #34335
Thanks for the information. Currently, I am taking Ofev. I have insurance through my work so cost is not an issue yet. I will be going on Medicare soon. Is there anyone out there whose Ofev cost is covered through Medicare?
February 7, 2023 at 3:20 pm #34337Kim MorrisonParticipant
I get a grant for ofev and my Medicare picked up $3000.00 but now Medicare is not going to pay. Check with the specialty pharmacy billing and they can give you info on applying for help.
February 7, 2023 at 3:22 pm #34338LARRYParticipant
I am taking Ofev at its maximum dose now for over two years. I recieve assistance in paying the bill through an agency called ” THE PATIENT ADVOCATE CENTER ” I believe that if your doctor contacts them they can help out. Between my medicare supplement and this agency it becomes VERY AFFORDABLE. IT IS A GRANT PROGRAM SO IF YOU ARE TURNED DOWN THE FIRST TIME KEEP TRYING. STAY ON YOUR DOCTOR TO KEEP AT IT. There are some side effects , but after retesting my lung capacity after 1 year of use I was at the same levels – NO DEPRECIATION IN LUNG CAPACITY. THE SIDE EFFECTS ARE SMALL PEANUTS COMPARED TO THE RESULTS. GOOD LUCK !!
February 7, 2023 at 3:26 pm #34339Donald Salzberg MDParticipant
Good afternoon GratefulDeb (awesome name)! I see that you have a great sense of humor—so not lose that. I have had IPF since 2018 and C as soon as my diagnosis was confirmed by open lung biopsy, I immediately started OFEV. As Im a sun ???? worshipper I opted to avoid Perfenidone. I’ve been on Medicare since 2019. I was told by many drug reps over the years that Medicare MUST cover at least two approved medications for each disease. There are only two APPROVED meds for IPF. I have had Medicare approval as soon as I went on Medicare but certain Plan D plans maybe do not cover it. It helped to work with a person who knows how to navigate the Medicare scenario. Once my income dropped down, HealthWell and Patient Advocate Foundation were both extremely helpful. They are co-pay assistance programs and as stated, provide $9000 a year to help. I thus have not had to pay more than $2000 a year out-of-pocket. Regarding anti-fibrotics, my IPF has worsened over 5 years at a ???? snail’s pace. I see no reason not to be put on one of these two meds one diagnosed. When I would diagnose glaucoma—best to treat as early as possible with approved/available meds as opposed to waiting until the disease worsened. So make sure you have the correct Medicare Plan D that has the drug formulary (minimal cost/year) approval meds. I make sure each year nothing has changed.
February 15, 2023 at 9:22 am #34405
Thanks Doc. I do not have the “good” Medicare Part D plan. I reached out to the drug manufacturer and am going through the process of trying to get their financial assistance and I do believe I qualify…..at least from the telephone call I had with them I am now hopeful.
February 7, 2023 at 7:56 pm #34340Joy LentersParticipant
Deb, here is the link:
February 8, 2023 at 12:25 pm #34364
Which part D insurance do you have?
February 7, 2023 at 7:57 pm #34342Rand O’BrienParticipant
I was first on Esbriet, which was more expensive than Ofev. Medicare after $X (I don’t know what that is at present clicks into Catastrophic rates, which are much less. I recieved a grant from HealthWell, an organization that gives grants for catastrophic medical expenses. Remember the Icares of BI is a means-based system on income. With the grants, which were used for the initial phases of MedicareD and the catastrophic coverage, I was able to make it through on the Esbriet, until I had an allergic reaction. Ugh……. Someone many moons ago suggested that milk and Ofev don’t go together, I found that to be true. Fresh cheeses, milk, will cause upset. A little is okay and Lactic free products okay. Grew up on a farm in Iowa and a rabid cosumer of milk…..in the past. Probably all depends on one’s system.
February 7, 2023 at 7:57 pm #34336NehaParticipant
Hi, here is the link to a blog where we put together patient recommendations for accessing affordable prescription meds for PF: https://pulmonaryfibrosisnow.org/2022/12/30/how-to-access-affordable-pf-prescription-medications/ Hope this helps.
February 7, 2023 at 7:57 pm #34341Joy LentersParticipant
Deb, here is the link to the BI Cares Application:
February 8, 2023 at 10:05 am #34359Carmen QuintasParticipant
I have been on OFEV for almost a year.I am now on Medicare, so that I no longer qualify for a pharmaceutical to pick up my copayments, which total thousands of dollars a year.I have been told that some Medicare Part D providers pay out more for the OFEV coverage, thus lowering the amount of the co payments. I am presently on Emblem health.Does anyone know which Medicare Part D providers would be a better option? I did call Medicare, but wasn’t able to get the info.Thank you very much.I wish everyone the very best on this journey which is hard, and made harder by trying to navigate the system
February 8, 2023 at 11:06 am #34362Laureen AschenbrennerParticipant
I take Ofev, and do so by a grant that I applied for. My supplemental insurance to Medicare does cover the bulk of the cost, and the grant pays for the balance. Talk with your care team and find out if they can help you with how to get started with the process. I am away from home right now so don’t have information at my fingertips.
I have been taking the drug for about 6 years now, and it has made a difference, I think so anyway. I was diagnosed in 2002, have rough days, but ultimately I am doing very well. Not on oxygen at all yet.
Good luck to you.
February 8, 2023 at 12:00 pm #34363
Thanks for all the replies. This is very valuable.
February 8, 2023 at 1:04 pm #34366Donald Salzberg MDParticipant
I have the Aetna Silver Script plan. Reach them at 866-235-5660 (24/7). From the time I’ve been on Medicare they have approved OFEV.
February 9, 2023 at 11:20 am #34370
WOW! Thank you to all of you! My pulmonologist is looking into B-I. I truly appreciate he time each of you took to answer my question.
February 10, 2023 at 1:11 am #34372William OlendorfParticipant
Espriet I have been told now comes in a generic from. You might enquire about changing……I have no idea what the cost is, but might be worth an opinion.
February 13, 2023 at 8:24 am #34382John BarnettParticipant
I was first diagnosed with IPF way back in 2012. Skipping to the topic of Ofev, I started taking Ofev about six years ago. It has been quite the journey. Side effects, contradiction with other meds…tales for another time. And recently, my provider also rejected me for continuation of Ofev. Reasons listed were an expired prescription.
Ran into this a few years ago. At the time, I got a little panicky. At the time, Ofev was running about $10K/30 day supply. It took me several days of phone calls to copay assistance programs, Medicare, my insurance at the time as well as my Cardiologist to get it worked out. For the next 5iv years everything was ok.
Now this year I get dropped. So as I began to work the phones, I also found out from the specialty pharmacy that provided Ofev, that my copay had exhausted the funding. I thought they were wrong but I also knew that it was going to expire soon so I let that dog go. The specialty pharmacy promised to pursue the copay and look into other financial supports. I don’t know if they ever did, they just left me in the dark. So I managed to get through to my insurance. Turns out that my copay had not run out of funds….Medicare evidently put a cap on how much they would pay in one year. Now that Ofev had increased in price to $160K+ per year, up from $120K just five years ago, they quit paying at that point.
So, like so many of others here, I am in the process of applying to BI for Ofev. While I am grateful in a way for this opportunity, I am also a little miffed at how I and so many others reached this point. BI has literally made billions of dollars in profit off of this one drug in just a few years. They charge excessively more than what they charge in other countries, such as Mexico, Japan, Canada, Europe. A generic version is available in India at $200/year, but here it is $200/pill. There are a lot of guilty parties that are to blame for allowing this to get to this point. But bottom line is, for those of us who have this disease and depend on a medicine like Ofev to offer some sort of quality of life, it is a moot point.
Meanwhile, I hopefully will get approved by BI to recieve it directly from them and at least reduce some of the worry. Going forward, I think there will be a generic version of Ofev in the near future just like Esbriet. Plus there are a lot of other treatments for IPF that are on the verge of hitting the market in the near future. I know that Fibrogen has started looking at different methods of administering their IPF med, both orally and as an injection. And I think that BI is getting close with another drug that currently in clinical trial.
But in the meantime Deb, everyone here has given a lot of good advice. And by te way, the financial requirement to be able to get it direct from BI is pretty generous. I think as long as you do not make 500% over poverty level, then you would meet that requirement. good luck
February 14, 2023 at 2:28 pm #34406
Thank you to EVERYONE for your kind replies.
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