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Living with Pulmonary Fibrosis is Expensive.
Living with any chronic illness, not just pulmonary fibrosis (PF) is expensive, and I know many patients can relate to this. However, I can only attest to the cost of living with PF based on my own experiences and yesterday I had a wave of feeling overwhelmed at the costs associated with this disease.
I know Canadian healthcare coverage of medications differs greatly from the US and other countries around the world, and I also know that the costs I am experiencing are probably a lot less than what others have to pay. As a result, I don’t want this post to become a comparison with others’ expenses and want to be respectful of other patients who have costs far exceeding mine. Please note that I am writing this post only based on my experience and costs pertaining to my illness, which can be overwhelming to me at times.
Last week I had two specialist appointments, and both doctors made medication adjustments. I was happy with this for the most part, as one doctor reduced my meds and I would prefer to be on less medication than more. However, I realized when I brought the prescription into the pharmacy that I still had over half a bottle of the higher milligram dose left. The doctors preference was that I discard this higher dose and start with what she prescribed me this week, and so I’ve done that. I also had to renew all 4 of my puffers in addition to this new medication, and get two new prescriptions filled as well. My bill was over $285, and that is with 80% medical coverage, meaning I was only paying 20% of the total bill. This means that my bill for medications was over $500! When I calculated this out in my mind, despite only having to pay 20% of the bill, I was quickly overwhelmed at what it costs to live with my illness.
I became very sad, not for me as someone who can thankfully afford medications (for the most part)… but what about those who cannot? My heart aches for them, because these medications, especially the anti-fibrotic ones, are so important to slowing the progression of our disease.
I posted a resource list yesterday on this forum, and I believe there was one listing for financial assistance for patients. Do you know of any other financial assistance for patients with IPF/PF to afford their medications? This could be a national, local or online resource that patients could access, and it could be focused on one geographical location or a wider area (ie. the entirety of the US). If so, I’d love to hear from you, and maybe your knowledge can be a game-changer for another patient living with this expensive illness!
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12 Replies
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Well, I replied to this yesterday ad nauseum, but it disappeared into a black cyber-hole somewhere. Consider yourself spared.
To the point: try Patient Services Inc. to see if you qualify for a subsidy on your meds. under their “public insurance” category.
HTH…!
J. in CO
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Re: cutting the cost by cutting the cord to Esbriet…thanks to Kaiser/CO!
After a two-fold diagnosis of IPF over the past four years, both by Kaiser and the preeminent lung gurus at National Jewish here in Denver, Kaiser, thanks to the recent uptick in her rheumatoid arthritis (RA) symptoms and markers, suddenly decided that my charge no longer has IPF! Instead, she’s got “ILD” (of which IPF is a “sub-disease” — go figure!).
The pros: she is no longer on $$$$Esbriet (last info. I saw, ca. US$112,000 per anno) and instead is on ¢¢¢¢prednisone (last copay: $5!) and something that looks like yellow matte finish paint called Mepron/atovaquone (again, $5 copay). The prednisone is going down well and has relieved some relief from the RA. The other pro, of which we see only two at this stage: Kaiser and the blessed Patient Services Inc. are off the hook for the cost of Esbriet.
The other stuff, Mepron, we don’t know what to expect, but orders are orders. When I picked up the Mepron look-alike the pharma. clerk asked, “Oh, does she have malaria??” I said, “Nope, just a touch of beri beri with dengue fever…”. The humor escaped her.
The cons: in spite of a double diagnosis of IPF by the leading lung disease center, by simply using the “comorbidity” of RA with an ILD (pick one….), our frugal HMO has an “out” for prescribing (and paying for) Esbriet. Never mind that the confirmed IPF diagnosis predated the RA by three years! And when I asked Kaiser how they could be sure that the Esbriet was no longer needed, an NP said, “Well, after all, the Esbriet hasn’t cured her IPF, has it? So it must be something else…”.
When has Esbriet EVER BEEN TOUTED as a cure for IPF???
The real doctor was unavailable for comment and we were running low on Lox, a scarce commodity in some remote Kaiser outposts, so we needed to head home.
The battle drags on…sometimes against the affliction but mostly within the ranks of those who should be allies. But there is a way, questionable though it might be, for avoiding $$$$med’s.
Cheers?
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Oh Jay, I am sooo sorry to hear of this experience!! I felt my blood boiling and getting angrier by the moment reading this, so I cannot imagine how you felt! So much of your experience as an American in terms of prescribing, billing, healthcare expenses are different for me as a Canadian so I don’t understand it fully, but I sure understand enough to feel like this is so incredibly unfair for you!
First of all, how can a “ILD” diagnosis (which you’re right, IPF is a subset of PLUS there are hundreds of ILDs) trump the confirmation of IPF from two centers over a couple of years ago, and thus change the course of treatment? I am maddened to think the change process behind this has to do with the cost of Esbriet! I know not paying for it might be a positive, and I am super glad to hear the change to Prednisone has gone okay but please be aware of the long terms effects of Prednisone use. I hate that drug, and I know many others have a hard time tolerating it as well, despite it being a lot cheaper than Esbriet.
How incredibly infuriating to hear that a diagnosis of RA changes everything for you all, and as for that nurse, who commented on Esbriet not curing IPF… I don’t even know what to say. Was your response back to her that there is NO cure for IPF right now, and it was never the intention for Esbriet to cure it but rather slow down the progression? Gosh she needs to be educated if a nurse thinks a cure exists for IPF!
What is your ideal: are you wanting her to be on Esbriet? What would the ideal situation be for you, in terms of how you want to proceed? Just curious to see if there is something we can help you brainstorm for a solution as I know problem-solving WHILE dealing with a chronic lung disease like IPF can be absolutely exhausting.
Thanks and take care,
Charlene -
Hi Charlene
Just out of curiosity I checked the cost of Esbriet on the internet and found that without insurance or any financial aid the annual cost was $94,000 per year. Using Medicare in addition to HMO insurance coverage the monthly co-pay was approximately $2,300. The Ofev was even more with an annual cost without insurance or financial aid of $96,000 annually. I didn’t check the co-pay with Medicare and an HMO but I assume it would be similar to the Esbriet.
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Hi Michael,
Thanks so much for sharing this information with the group!
My jaw almost hit the floor when you told me the costs of our anti-fibrotic drugs, which I desperately believe everyone should be on to try and slow the progression of their disease. That being said, I know it isn’t a financial reality for everyone and that breaks my heart. In Canada, our health care is so much different so I likely never would have considered the annual cost of these medications, and I just can’t believe it!
In the US, does “C0-pay” mean what the patient pays as part of their insurance plan? Meaning, they would have to pay $2300 per month for drugs to extend their life? I am shocked! I know that I wouldn’t be able to afford that living on my own in the US… wow!
Thanks for sharing, this was a real eye-opener for me. Are there any non-profits or agencies that are dedicated to helping patients afford these drugs? That would be wonderful, but somehow I anticipate the answer to that question would be “no”.
Take good care, and thanks for connecting with us – its always great to hear from you, as always!
Charlene.
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Doesn’t it amazing you how much money these companies are charging for their treatments?
Michael, I’m the manager of the forums, and while I do not have Pulmonary Fibrosis, I do have Spinal Muscular Atrophy (SMA). I am currently on the first FDA approved treatment for SMA. My first four injections, which they call loading doses, cost $750,000. My insurance turned me down numerous times, but thankfully, the pharmaceutical company agreed to put me on their free drug program.
It still amazes me, how much money some of these treatments cost. You are in my prayers and I wish you nothing but the best.
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Thanks so much for sharing your experience with SMA medications Michael! Still unbelievable the cost of life-saving treatments, and it is nice that you can share an American perspective to this thread as it greatly differs from my experience with Canadian healthcare and medications. I’m so glad the drug company put you on the trial and you can get your medications for free 🙂
Cheers,
Charlene.
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Hi Michael
Yes, I find the cost of these drugs amazing. While I understand that while developing a new medication or treatment is very expensive and most likely would not happen unless justified financially by the drug companies. A person is really at the mercy of the insurance industry or, as in your case, the drug company.
Sometimes I think the drug companies may be much more generous than the insurance company to whom you pay monthly premiums.
The best advice I can give anyone is to make sure to take full advantage of Veteren insurance benefits if you’re entitled to do so.
best regards Michael
Michael
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Good tip Michael! I’ve heard a lot of folks talk about the Veteren insurance, and how it is beneficial if they are entitled to it. Wishing you nothing but the very best.
Warm regards,
Charlene.
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Hi Charlene
I’m not aware of any non-profits that afford aid for patients with this disease however I’ve never really investigated that avenue since I use the VA. Yes, the insurance co-pay is the patients monthly share of the cost of the drug. I’d really like to hear from those who are subjected to this expense and if they are able to get some sort of financial aid.
Hope you all have a great day!
Michael
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Hi Michael,
Thanks for getting back to me regarding this topic! I wasn’t sure if it was something offered in the states, as I know it is very limited (and often not even possible) here in Canada either. I have heard of people getting “compassionate coverage” for drugs, but usually those are specialty circumstances.
This would be really interesting to hear from others about the expenses, and how they navigate it / whether they receive some financial aid. Hopefully others see this thread and respond! I also was privately contacted by an Esbriet rep who is going to share some resources with me, so once I have them, I’ll sift through them and post to the forums. Hopefully there is some information in there that would give some insight into the financial difficulties of this drug.Hope you’re doing well, and thanks for connecting back!
Kind regards,
Charlene
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Charlene,
I mentioned earlier that Patient Services Inc. is a possible source of help.
As for Esbriet, the originator Genentech have some sort of financial relief, or so their info. I sent for/got recently hints at it (three years after my charge started on Esbriet, since apparently Kaiser never informed them of being in the “club”). Ironically, Kaiser hounded us two years ago to find “…some sort of financial assistance” but without any hint as to who/where. Luckily, we found Patient Services.
As for the “street price”, review the PFN info from 2014 when Esbriet/Ofev hit the streets:
— but I know factually that it’s gone up at least US$10K since then.
As for veterans’ assistance, one gets that only if one is either a US federal retiree with military service, a “career” service type or a “war-time/conflict” vet. I was in for five pre-Vietnam peacetime years and my eventual benefit will be $100 burial. Basta. Otherwise, I get nothing. Thankfully, I myself don’t need any help so far.
J.
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