“Radiological evaluation through HRCT” by IPFeditor – Own work.
Licensed under CC BY-SA 3.0 via Wikimedia Commons.
In the article “I.P.F., Not Aging, Could Be Causing Breathlessness” in the New York Times this week, columnist Jane Brody explains that the drug Esbriet (pirfenidone) can “slow the loss of lung function and significantly reduce deaths” from an incurable lung disease called idiopathic pulmonary fibrosis, or I.P.F.
The article notes that Esbriet was approved in the U.S. in 2014 and now 14,000 people have begun treatment, which costs $94,000 per year. The article also notes that the drug has been available for several years in other parts of the world (including Japan, India, Europe and Canada).
What the article does not mention is that this incredible drug can be purchased at just a fraction of the cost through many online pharmacies which dispense it from licensed pharmacies outside the U.S – where the cost is only about $2,000 per year, rather than $94,000 per year.
The standard dose of Esbriet is 801 mg per day – 3 capsules, each containing 267 mg of pirfenidone, according to the NIH website DailyMed. Outside the U.S., pirfenidone is sold as 200 mg capsules (so 4 capsules would provide a similar dose – 800 mg). In the U.S., the price of each 267 mg capsule (without any discount) comes out to about $85, while a 200 mg capsule from outside the U.S. costs about $1.50 (prices listed at http://www.pharmacychecker.com/generic/price-comparison/pirfenidone/200+mg/)
Why must Americans (and our government programs) pay 40 to 50 times more than to get this drug in the U.S. than from elsewhere?
Esbriet pricing is an example of price gouging.I have IPF sought Rx from VA.They have online protocol for dispensing.Told they only use for patients awaiting lung transplants and that side effects were tough diarrhea etc.NY Times article said patient got drug @ no cost through Medicare ?Only through Plan D is mentioned online.Do you know if Medicare offers this rx through Part B as with inhalation meds?Thanks for this service to patients.I have used your info to get rx’s from Canada.Any info you have will be appreciated!
I finally got this drug after getting in touch with my Senators’ office, Sen. Dean Heller of NV. I just started it, but what I wanted others to know, I’m not on oxygen yet…I did have a lung biopsy done, ( 5 days in the hosp., 2 in ICU )…I’m waiting now to see how this drug will effect me….Thanks to the VA for finally coming thru…
The VA IS GREAT TO MANY COMPKAIN ABIUT THE VA THANK YOU FOR THE GOOD WORD.
Can you tell me if you noticed a difference. Also any side affects? My Dad just got approved and will start taking it soon.
My wife has ipf and we went to the doctor in charge of EU approval {in Giessen in Germany). He provided us with some pirfenidone (called Esbriet in Europe). We noticed a reduction in coughing for about 6 months. And that is all. We were lucky to be able to get Tranilast from China afterwards. Tranilast is what pirfenidone is based on. As far as I understand, the makers of pirfenidone negotiated an exclusive license for tranilast. My wife had an immediate positive effect from tranilast. Sadly, we could not get more, because the exclusive license prevents access in the US and Europe. A box of tranilast cost 43 in China. Pirfenidone costs $$$$. We still have some boxes of pirfenidone, which proved useless after a short time.
0
I meant $3 for tranilast.
Are you still have it I really need for my dad
Dear Ed,
Could you please email me the picture of Tranilast? And where did you buy it in China?
My email: hungpn.th@gmail.com
Hope to hear from you soon.
Thank in advanced!
Hung
Can you please send me a picture of the box. If you still have some left I can used for my sister.
thanks
Tomas
May ankal was leving kuwait 40 years and he is now in kuwait hospital docters tald me hee need pirfenidone so we can.t give him only we give kuwaity people only. And this man can.t by coast what we do can yu helbing
Hi Mohamed– You can compare prices for Pirfenidone among verified online pharmacies here: https://www.pharmacychecker.com/pirfenidone/
I started taking esbriet and found out my lung disease was r/a related. The doctors at the mayo put me on celcept instead. I have two full unopened bottles of esbriet. Is there a site i can sell them on?
They put me on cellcept also but it stopped working after awhile, now on injections of Cimzia each month and working great after a year , very little progression..
Me gustaria comprarte si aun esta disponible el medicamento.gracias
You still have them?
How much do you want for it.
Not everyone gets those side effects. I felt sleepy and had mild indigestion. I was advanced in the disease when I got the medicine. I’m 82 and am not going to have a transplant. I feel as if he disease has, in fact, not progressed since I started it. I think you should get it if you want to keep on living. I did, and so far, I am.
I have been diagnosed with IPF and take Esbriet and have done so for a year+ now. There is good new ahead as in 2021. Next year the patent protection on this drug runs out and could be offered as a generic. Several companies have applied. However as to why it is so expensive now, it is partly because the Rouche bought the developer of Esbriet in 2014 for 8 billion dollars knowing that they would have to make that up in 7 years. That purchase was necessary to allowed them to apply for quick approval (received in two months after purchase) as an urgently needed drug. Seems to me the FDA could have come to that course of action without the purchase burden since the drug had been already been approved and in use in Europe.
Personally, I am totally in favor of reasonable drug prices and I think is very clear that any universal medical coverage proposal is financial suicide if costs at all levels including drugs is not addressed.
But a good part of US drug costs is the FDA approval process (which is very flawed and expensive) .
Let me give you an example of a current drug being held up by the approval process. A small company, IPCI, has an Opioid drug that even the FDA acknowledges prevents overdosing. All drug approval applications first go before an advisory board made up of “impartial” of doctors. A year ago the company went to that board. The board declined the drug by upped the testing requirements and spending most of the meeting questioning its “blue dye” component. As a result, ICPI removed the dye and did the additional specified tests which were successful. Months later, about 2 weeks ago, they appeared again before the board and again the drug was rejected. Interestingly, the FDA representative to the board felt it necessary to apologized to IPCI as they had done exactly what was asked and had verified its claim of preventing overdoses. Virtually always the FDA follows the board’s recommendations I guess the FDA will be alright with continuing to have 150K a year die until this can be all worked out.
This is not to say I believe there is no price gouging and price fixing in the drug industry. Clearly that is happening. How that can be fully fixed by federal legislation is uncertain and will probably with result in numerous court challenges with delays. But what can be done now and is in the power of this administration or who ever wins in November to address the inefficiency and conflict of interests that appear to be found in the advisory board. It will be interesting if any of the candidates will acknowledge this. Big money is at stake here.
Oh, and as a final note, for those who have IPF, I am now over two years since diagnosed and my lungs are much clearer now (per MRI). Also my SO2 percentages have improved as I go about my daily activities (now consistently in mid 90’s where formerly mid 80%). Of course, anyone who know IPF knows tomorrow could be completely different. But for now, I am glad to have Exbriet. I hope you all using it have like results.
My mother was just diagnosed with IPF today and we are trying to get more information on it. Her doctor’s office told her medicare will not pay for esbriet and it is $3000 a month. If you don’t mind me asking how old are you? My mother is 70 and has had lung issues her whole life.
My 75 year old husband was diagnosed with IPF 2 years ago, and started Esbriet. So far no side effects! He has lab tests every three months to check liver function, since Esbriet could affect that, but so far no problems. Our HMO only charges us $10 each month for it. It has to be delivered by FedEx, and signed for, from a special pharmacy because it is $11,500 for a month’s supply.
My dad had been prescribed Esbriet. We can not afford the $2250. MONTHLY Out of pocket. Any suggestions?
Your best options may be to apply for patient assistance (needymeds.org) or order internationally. Outside the U.S., pirfenidone — the generic — is sold as 200 mg tablets (so 4 tablets would provide a similar dose — 800 mg). In the U.S., the price of each 267 mg brand-name capsule (without any discount) comes out to about $35, while a 200 mg generic tablet—available from outside the U.S.—costs 72 cents. That’s 98% savings on lifesaving medication. Try comparing prices here: https://www.pharmacychecker.com/pirfenidone/ Let me know if you have any questions.
They do it because they CAN!! Unconscionable!!
American greed at it’s’ best.
Our congress knows about this type of price gouging, and they are not doing anything about it. I think we all know why.
On that note, check out RxRights.org to become a citizen activist by contacting your elected officials to do something about it.
Yep rich gets richer
I began taking Esbriet January 2015 after losing two brothers to the disease, one in 2000 (age 49) and one in 2014 (age 62). I am being monitored by the same doctor at Mayo Clinic because I too have it but not full blown yet. Anything can trigger it says the doctor yet with our family history, he did not see any need to do the painful biopsy and I am not on oxygen either. The drug was covered by various drug assistance companies until I retired from teaching 9/1/15. At that time Medicare picked it up but I pay a $60.00 per month co-pay. I too wonder why it must be so expensive when it is the best of only two drugs available to stop the fibrosis from progressing. There is really no cure. The side effects can be horrendous, weight loss to begin with, stomach issues and worst of all, sun-sensitivity that prevents me from even getting in the car or going near windows without complete cover-up with UV protected clothing and sunscreen. I am just thankful I can afford the co-pay. I am sure some cannot. I guess I am thankful that I live in Alabama and my retired teacher’s medicare policy covers it–at least for now.
what part d plan do you have?
We’re just now looking into it so I can retire and everything I read Medicare doesn’t cover it unless it’s thousands of dollars to did you get Medicare with an advantage how did you get it $60 a month would appreciate feedback it is so confusing
I started taking Esbriet and after three days I have a Horrible rash of super dry skin on my face and my fingers are peeling , also a real bad Measles type of rash covering my stomach, shoulders, arms, and back. I have stopped taking the Esbriet and it has been 12 days and the rash or the peeling skin is not getting any better!
PharmacyChecker does not give medical advice but I believe you should contact your healthcare provider immediately to find out what you should do.
Medicare does pay for esbriet but at a reduced level (high co pays). The speciality pharmacy may be able to connect u with an agency which helps folks pay for this very expensive medication.
I have been taking Esberit since August 2016. Serious stomach issues. My Doctor has slowly increased my dose to allow my stomach to get used to it. It is now Mach 2017 and I’m up to 8 pills a day (full dose is 9 pills a day. It takes me a few months to adjust every time I increase dose. Sometimes I back down a pill when I have severe problems and then I go back up as symptoms decrease. So far so good although my stomach pretty much has problems almost every day. But it’s better than the alternative. Some days are better than others.
I started having the deases three years ago. I did bioypsy two years back and since then, the deases progression is moving where I am right now using Oxygen whenever I get tired. The medicine I use is Nintedinab for almost one year &half. Recentlly, I have got new consultation from a doctor in germany and he described Ebbriet 267mg to be used. I did not take yet because I affraid from the side effects. I am not convesed yet, so any one could help?
Hi B – You’re seeking medical advice and we can’t give you that here, so please consult your doctor or other healthcare provider.
I was just diagnosed with IPF last week after 2 years of watching, waiting. Had all of the tests, biopsy etc. so this is very new to me however I have 2 brothers with same disease. One has passed on and the other on oxygen now. He now has cancer in his lungs and will begin treatment soon .. We are trying to get the Esberit right now . Praying that I will have lesser side effects and that it will be helpful.
Genentech (Roche) gets $94K/year for Esbriet because they have to in order to get a return on their investment of $8+ Billion to buy the rights to the drug in the US. If Roche hadn’t purchased the company, I’m sure some other company would have.
I have mild IPF so far but it is progressing. No O2 yet. My insurance won’t pay for it until the disease is advanced to 60% FEV. So essentially, they won’t pay to slow the disease down until your FEV is 60% of normal. It doesn’t seem right to let so much life slip away unchecked when there is a therapy available that works.
The drug is available from Cipla in India at a much lower cost. The drug is called Pirfenex and that is what I using. I have taken both Esbriet and Pirfenex on my journey and I can tell you the side effects are about the same. I couldn’t swear they are identical, but certainly the same stomach upset, headache and fatigue. In my view, the side effects are worth the extra potential years.
I disagree with the 801mg per day (3 tablets) in the UK the dose is 9 tablets a day (3×3) which equates to 2401mg per day. I have been taking this dose for 3 years.
I am 80y/o was just diagnosed with IPF. Please consider me for a trial of ESBRIET . I’m very healthy and need serious help can’t find support group near me. I might help you especially at my age. Thank you ,Hunter
My mother was diagnosed with IPP-ILD early last month and put on Pirfenex. But on seeking a second opinion the 2nd doctor diagnosed CTD-ILD instead. Pirfenex was retained and Mycophenolate was added. We get Cipla Pirfenex at $ 1.1 to 1.8 per tab depeding with supplier. The side effects are mainly stomach pains. Does anyone know whether CTD is also hereditary like IPF?
Correction: It’s IPF-ILD and not IPP-ILD.
That is Connective Tissue Disease
My mom was recently dxd. Her dr started last June helping her get financial assistance to get this drug.
She got word today that HER copay will be $8000.00 a month. I counted the zeros.
We are being told it can ONLY be purchased through the drug manufacturer. After reading all these comments, I am even more confused. How are some of you getting it for $60 bucks a month???? What is going on?????
Hi Connie, I’m sorry to hear about your mother. To help with the cost burden, you should speak with the doctor about international options. You can compare prices among verified international online pharmacies on PharmacyChecker.com and order from the individual pharmacy, providing them with a valid prescription. https://www.pharmacychecker.com/generic/price-comparison/pirfenidone/200+mg/cpp/
After searching the internet I found out that esbriet is manufactured in Mexico. I contacted a pulmonary specialist there, had an appointment and a high resolution ct scan. I bought 6 months worth for $2700. About $450/month
I am diagnosed IPF in early November 2017, and prescribed Indian Pirfenex 200 mg 6 tablets per day. The cost of 100 tablets is about $30, that means monthly one would need about $60. I am in Singapore now and waiting for my new blood reports and further advice and medication by Sing specialist. I can never afford to buy the US Pirfenidone and spend $96,000 a year! No way!
Hi folks, I wrote in this forum in November 2017, when I was first diagnosed IPF and I have been on Indian Pirfenidone 200mg, 9 tabs per day. In last two months, my condition deteriorated and now my TLC is 45% and DLCO is 29%. Last Nov it was 67 and 59 respectively. I feel fatigued and can’t take my walk. Can anyone suggest any other drugs or remedy?
I am the oldest of 3 Vietnam veteran brothers, my brother Steve was diagnosed & about2months later he died,Mike was diagnosed about7months later with ipf,he was on a transplant list& on the day of the surgery he developed pneumonia & passed away,I was diagnosed about4 yrs.ago,I was put on esbriet& mycophenolate my disease hasn’t advance but when I get a coughing spell feels like I’m going to die.Lately I’ve been in better shape,I get my medicine thru a foundation cause the va won’t recognize this as war related. It’s hard to get on the list but the place is calledGENENTAC ph.1 833 888 4363,good luck to all of you,I will pray for all people with this illness
Hello, my mother was diagnosed with pulmonary fibrosis about 1.5 years ago and is on O2 24/7. She is 82 years old and the doctor believes her pet bird maybe the reason. She never smoked and couldn’t think of anything else. The doctor is thinking of starting her on predisone which concerns me a lot. She does have Medicare and was wondering if that covers the cost pirefenex in the states?
Hi Jayme, Thanks for joining the conversation. Try using this website to check coverage: https://www.medicare.gov/find-a-plan/questions/home.aspx All the best.
I cannot believe the price of this drug. if you have this disease and not rich it is a death sentence. My wife has the disease and with insurance from her job it’s $200 a month. If and when she cannot work I have no idea what to do. This is absurd. God help us and pray that these stingy drug makers get a HEART. Ridiculous!
Robbery by stingy pharmaceutical companies. UNBELIEVABLE!
Bill they told me 6 mo.ago I had IPF and I am trying to get esbriet I was told it costs 96000.00 a year . I can’t pay that and they got the price down to about 3000.00 a month still working on a better deal. I am going to be 68 soon and have not worked since august 30 of last year . I will say esbriet is trying to work something out for me with a hole lot of luck I will get from them at no cost .A lot of people are trying to help me and I appreciate the help.
It is so confusing all these insurances Medicare and Medicare Advantage and supplements and VA I want to retire but I cannot tell I know my husband’s drug will be taken care of how do we find out who will pay the best price for us I don’t want to end up with a company that doesn’t even pay for it and nobody will seems to commit
Jonas Salk gave his vaccine away free of charge. A place to him was reserved for him in heaven.
Hello Guys, What is the trusted website to buy Pirfenidone. My friend has been diagnosed IPF and he is in bad phase because he is taking oxygen daily and need this medication. I found this page online but I don’t know if I can trusted.
https://www.pharmacychecker.com/generic/price-comparison/pirfenidone/200+mg/
Hi Elie–All of those pharmacies listed on this price comparison page are verified by us (https://www.pharmacychecker.com/generic/price-comparison/pirfenidone/200+mg/). You may be interested in our latest post: https://www.pharmacychecker.com/ask-pc/where-can-i-buy-esbriet-(pirfenidone)-in-canada-online/
Do you provide Esbriet 801. OMG tablet
Hi Elizabeth – It looks like pharmacies that we verify and monitor currently only offer the generic version. You can compare prices among verified international online pharmacies here: https://www.pharmacychecker.com/pirfenidone/
I am a74-almost75 yr. Los man& a Vietnam veteran, I’m also the oldest of three brothers all Vietnam veterans my middle brother died when his ipf turned to cancer, my younger brother died when he was about to get a double lung transplant& instead got double pneumonia, I just hope I don’t go out struggling for breath like they did,but I know it’s coming,this Esbriet is helping some ,good days bad days,luck to all of us who deal with this disease
I am having difficulty sleeping, I would like some advice how to cope with it.
Hello all,
My dad recently died of pulmonary fibrosis sadly. He had been taking Esbriet for several years and they had helped him alot. We had ordered him a new shipment of this medication. The medication has recently arrived but we no longer have any use for it. These medication cost us alot of money so I am looking for people to help out in some way. You are welcome to get in touch with me via my email address: sunny.e.salim@gmail.com
Hi Sunny — If you are looking to get rid of unneeded prescriptions, there are several organizations that facilitate donations of unopened, unexpired prescription drugs. The organization Sirum will take your unused prescription drugs and reuse them. There are also state-run programs which can help you donate prescription drugs. Some of these programs accept donations from across the country. Iowa’s program, titled SafeNetRx, accepts donations from any individual in the country. Individuals “at or below 200% of the poverty level” qualify for assistance from SafeNetRx. Wyoming’s program, called the Wyoming Medication Donation Program, also accepts out-of-state donations. The Product Stewardship Institute, an organization that advocates for the recycling of all products, period, has a drug recycling database which may be able to help you find the right program for your needs.
My brother-in-law has 12 x270 bottles of Esbriet 267mg he does not need, and he wants to find someone who can benefit from them