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    • #23885

      I have seen a number of suggestions for people to obtain their OFEV medications from India but heard little from people saying that they actually use the medications from India. I am a bit concerned about buying drugs from outside the country but when I consider the cost in the USA I am all ears. Was also told Canadian pharmacies were often used but I haven’t been able to locate one that sells OFEV. Are there people that can shed some light on the subject?

    • #23887
      Thom
      Participant

      Hello Randy,

      When I was first diagnosed I went to Yale New Haven hospital.   There was no way I could afford $10,000 a month.  My doctor was from India.   She told me her mom was now living in the US and has IPF and that OFEV was made in india by Boehringer Inglehiem.  She was having it sent to her.  So my GUESS is it’s the same med.

      A personal friend of mine is a scientist at Boehringer,  their HQ is located a few miles from where I live.  She says it should be the same drug but would have a pharmacist check before ingesting.

      Turns out my insurance covered the full cost.

      Good luck.

      Thom

    • #23891

      @randy-miller

      Randy,

      My husband is on Esbriet since 2014.  Our insurance company would not cover it so we got the generic version of Esbriet, which by the way  many people with PF were on this generic brand before the FDA approved Esbriet, from India.  We were getting the generic brand for 4 years before our new insurance company covered Esbriet.  We at times had issues with customs in which they held the medication at one point.  The customs agent did release it to us.  The drug company who makes the generic version is Cipla.  We had absolutely no problems with the medication.

       

       

      • This reply was modified 3 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #23894
      Gregory Dixon
      Participant

      A cautionary tale can be found in a book by Katherine Eban entitled “Bottle of Lies” about generic drugs manufactured in other countries,  especially India.

    • #23900
      JillT
      Participant

      Absolutely agree, @gregldixon. I’ve heard a few interviews with Katherine Eban outlining how the book arose and the research she put into it – it was like reading a story about organized crime. Absolutely astounding levels of corruption, and not just in India. I haven’t read the book myself yet, but I imagine it reads like a gripping “whodunit”, yet it’s all true.

    • #23902
      john styles
      Participant

      When I had Hep C and prior to the treatment now available, the treatment was interferon with Ribavirin which was available in other countries prior to it becoming available in USA. I flew to Mexico city where I  took a cab to the Manufacturer’s lab which had the entrance guarded by guards with machine guns and I was escorted by t the labs into the sales office and purchased the salesman’s samples for $2000 and given a prescription to clear customs. When the custom agent at Miami asked what I had in the bag I told him it was full of prescription drug and I had a prescription and he  waved me thru without looking at the drugs.  The drugs were the real thing and all done with 20 hours. I had to wait untill about 5 years ago when the came out with the current drug that cures Hep c to get cured.

    • #23903

      I think I need to try and get my hands on this book @jill-tanner ! Sounds like a good one. I’ve never bought any drugs overseas, with prescription or not, as the Canadian healthcare plan covers most of Ofev here but I have heard of a few people doing it. I was always uncertain about it, but don’t judge anyone who may need/want to go that route to get their medication. A friend of mine who is very educated, financially secure and informed did this, so I was curious about others’ doing it. I’m going to try and order the book. Thanks to you and @gregldixon for sharing.

      Charlene.

    • #23909

      @randy-miller

      Hi Randy,

       

      Really good topic to bring up for discussion. I personally have never done this, but do know people who have, so I can’t really share a lot on the topic. I hope others chime in for discussion who may be able to share personal experiences for you. I am in Canada and have no trouble obtaining Ofev, but I don’t believe the pharmacy would dispense it to a US citizen without a drug card and/or valid insurance. The only drug I know of that can be purchased across US-Canadian borders is insulin, there was a news story about that not too long ago. Goodluck, and I hope folks can share some experiences with you.

      Charlene.

    • #23931

      Hi John…thank you for the post. I had seriously considered flying to Mexico but with all of the killings there I wasn’t too moved to do so. Still it does say that drugs can be the same

    • #23932

      Hi Charlene,

      Just getting used to the forum and it’s protocols. In addition to being a very poor typist I am struggling with the site…guess I will learn. Please let me know where I need to change if/when I mess up. I really appreciate the forum after being shocked by my diagnosis. Real people with real stories and advice. Best Regards….Randy

    • #23930

      Hi Jillt…sounds very much like what I am finding here in the USA. My wife researched the pharmacy we were told to use, and wanted me to pay $2756 for a one month supply, was owned by doctors according to their website. Beginning to wonder if this is an endeavor that can be solved.

    • #23927

      Thank you Thom..Still looking for help. Your post gives me hope. Looked up Indiamart on internet and instantly had 21 responses. I picked one and got some additional info. Called the local pharmacy that the doctor gave me to check the prices associated with my prescription…without insurance one month would cost me $131,100 and with insurance it would cost $2756. Way out of my budget. One month from India would cost me $1000 plus shipping.

       

    • #23928

      Hi Lilly…thank you for your post.It gives me hope for resolution

    • #23929

      Looks as if I need to do some reading…thanks for the info

    • #23941

      Hi @randy-miller

      Welcome aboard! Sorry you’ve needed to join the forums as a result of your own IPF diagnosis, but please be assured everyone is so wonderful on this site, and will help you the best way we can. The platform can be tough to get used to at first, but you’re doing a great job! I noticed your posts were held for moderation/approval by Mark or I (as co-moderators/key holders) but for no specific reason and not because of something you did. Sometimes this just happens when the site suspects spammers, so I had our tech genius add your username to the approved list and you shouldn’t run into any posts being held anymore. 🙂 Thanks again for writing to us and I look forward to getting to know you a bit more.

      Stay well,
      Charlene.

    • #23947
      Thom
      Participant

      Hey there Randy.

      Dont lose hope!!  There are other sources that help with medicines.   Look here on line and you will find several.  Not for nothing but I’d look up Boehringer Inglehiem Danbury. CT and email them  you have nothing to lose and everything to gain.  About 2 months ago they called me, asked a few questions about ofev.  They also asked me what I’m paying for it.  I told them my insurance covered it.  It’s pretty late now but tomorrow I’ll see if I can find an email address for them.  I’ll also phone a friend of mine. Shes a scientist at the place.  Perhaps she can direct you to someone that can help.

      Funny thing. About 30 years ago the president of Boehringer bought a beautiful home in this area.  He hired me to do a lot of fancy ornamental iron work.  He was not a very friendly guy!  Maybe he was having a bad day, I dont know.  It was a very cold December day. That i do remember. And i WAS having a bad day.  We exchanged several words which i wont repeat here.  After that was done I told him, ,”Dr if I ever get sick, I’d sooner die than swallow anything from your company”.  I got paid.  Stormed out of his house.  Ha ha to me!  Little did i know they would be the ones keeping me around.  It’s all good i suppose.

      Dont lose hope. I’m sure it will work out.

      I doubt anyone here, expected to be HERE on this website.  I’d say it was a surprise to all of us.

      Hang in there.  I will try to find a name for you.  If nothing else, have your wife look around on line for an organization that perhaps can provide assistance.

      Happy Easter.

      Thom

    • #23948

      Hi Charlene…This forum is a breathe of fresh air…a whole new world for me. People have been so open and down to earth Randy

    • #23949

      Hi Thom…really nice to hear from you. I read my post to you and noticed I gave an incorrect price for a one month supply from the pharmacy that quoted me pricing. I said the price without insurance was $131,100 while the actual figure was 13,100 for a one month supply without insurance. That is still a far cry from the $ 1030 price to get it from India. REALLY appreciate you post…I  will hang in there buy costs are terrible. Thanks for your thoughts…Happy Easter

    • #23952

      So glad to hear this @randy-miller ! While I wish this platform didn’t have to exist at all – meaning, none of us were dealt with IPF/PF – I am glad we have this special online community. The people here are so kind, welcoming and supportive so we’ll always help the best we can. Glad you’ve found us as a resource….do feel free to reach out anytime. Happy Easter to you and your family my new friend!
      Charlene.

    • #23962
      Luke R Matthews
      Participant

      Hi Charlene

      Both Ofev and Esbriet have programs to help their patients. I believe they will offer financial aid as well. It might be worth it to check with them. Ofev’s program is called Open Doors. The number is 866-673-6366. Esbriet is called Esbriet Inspirstion 844-693-7274

      Walgreens Alliance Specialty Drugs has helped me  by providing information and phone numbers and websites which help with the cost of the medicines for free. Their number is 877-627-6337.

       

       

    • #23973
      Mick Donoghue
      Participant

      Sorry but there is not a generic equivalent to Esbriet (nor to Nintedanib). They are both fully patented and will be so for a few years. Either of these medicines sourced from a different manufacturer is going to be illegal definitely and not identical, likely. There is the possibility that a company’s pricing policy may mean that it is a bit cheaper in one country than another so maybe some saving could be made, but caveat emptor.

    • #23976
      Piet Potgieter
      Participant

      Dear Mick,

      There is most definitely a generic for Esbriet and it is called Pirfenex and made by Cipla in India. If you live in India, you will pay roughly one American cent per tablet. If you live in South Africa as I do, you can import the tablets, but now you pay dollar prices. A year´s supply costs me about $900. I have been using them for the last 3 years. I was diagnosed in January 2017 and told I have three to five years to live. I started using Pirfenex three months later and my condition has not deteriorated. I have the typical symptoms: my oxygen drops to about 88% if I walk fast, but the white spots on my lungs remain the same on the annual CT scan.

    • #23978
      Robert B
      Participant

      For a few years Spiriva and Advair cost me so much I looked for a solution.  I found a Canadian Pharmacy (directdiscount drugs)? and it cost me several hundred dollars less, without insurance, than with Medicare.  They came in name brands or generic.  They were from India.  I never once had a problem with them.  I had to order 4 weeks in advance.  My doctor faxed them.

      Recently, I was prescribed a different drug to replace both of them.  It is Trelegy, once a day.  It seems to work better.  However, I also had to start taking an antibiotic 3 times a week and Prednisone everyday.  I now feel better than I have in years.  I’m walking 2 plus miles a day.  I’ve never been willing to try.  I’ve been on oxygen four 18 years but I’m stronger than I’ve been.  I will have a biopsy in 3 months.  By the way, Trelegy is a lot cheaper.

    • #23980

      Piet you are right! There is indeed a generic version of Esbriet; Pirfenex  was on this for 4 years due to the fact that his insurance refused to cover Esbriet.   People were on Pirfenex here in the states before Esbriet was approved by the FDA in October 0f 2014.  We had it shipped to us from India.  I’m not saying that there are not steps to take to get the medication but it can be done.

    • #24017

      @luker

      Hi Luke,

      Thank you so much for this information – I had heard about these programs prior but it is always good to be reminded, plus I don’t think I had this contact information before. I will be sure to reference your post when others ask, and I have no doubt your note will help them as well. Thanks again for taking the time to share this with us.
      Charlene.

       

    • #24018

      @westds01

      Hi Robert,

      Wow, thanks so much for sharing! I am also on Spiriva and it is an expensive medication, but the Canadian health insurance and my employee insurance does cover most of it. Glad you were able to obtain it and Advair from a Canadian pharmacy for awhile, but the Trelegy sounds more convenient (one drug for both) and cheaper! That is great, and way to go for finding a solution that works well for you. Glad you’re now starting to be active, that is great for our mental health too. 18 years – wow! Keep going, you’re an inspiration.

      Take care,
      Charlene.

    • #24084
      Gregory Dixon
      Participant

      @randy-miller

       

      Randy,

      Are you on Medicare? If so, Medicare civers about 80% of the cost, just under $10,000 per month. Someone from Open Doors referred me to the HealthWell Foundation. In one phone call, they approved a $9000 grant to me (for a year). Miraculously, the remainder of my copay disappeared and I pay nothing for my Ofev, which I started last week. So far, no problems at all.

       

      • This reply was modified 3 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #25081
      Paul Sanchez
      Participant

      The Physician’s Assistant (Hereto after using the acronym: PA), said she’d be surprised if my Dr would prescribe anything from India. Do the drug companies have this locked up too?

      (I guess I’m becoming more and more of a conspiratorialist).

       

      Paul

    • #25087

      @paul-sanchez

       

      Paul,

      My husband’s Pulmonologist did write a prescription because he knew all about the generic from India and people suffering from PF were using the generic before the FDA approved Esbriet.  He knew we were unable to get the insurance company to pay for it, programs were not people like us who had savings but never considered the fact that at $10,000/month, that would wipe us out.  After being wiped out, then we could be on the program.  It can not hurt to at least try if you have tried everything else.

    • #25091
      Paul Sanchez
      Participant

      I did try. Just waiting on Dr’s response. I also found out that if  Dr administers meds from an office medicare part N would cover the cost! I asked he Dr about that issue as well.

      Tnx

    • #25093
      Gregory Dixon
      Participant

      I recommend that you read Bottle of Lies by Katherine Eban. It is a thoroughly researched volume on the generic drug industry with particular emphasis on India and China.

    • #25095

      I hope that you hear good news! It is hard enough dealing with this disease to only add the stress of how you can pay for it.

    • #25107
      Carol Carmack
      Participant

      I have been taking Ofev since about February 2020. I too could not pay the price they wanted, “they” being Boehringer Ingleheim and the price $2500 per month. So I called them and was able to arrange to receive it free of charge. I don’t recall whether I had to fill out forms or not, but they can tell you. I don’t know their location but the larger portion of any medicine we have in the U.S. is manufactured in China. I believe the Trump administration is working on bringing that back to the U.S. though.  Ive had a very hard time acclimating to the drug. It was no problem until about three months in. I quit taking it for two or three weeks then restarted it and tried a couple of changes that have eliminated the problem so far. Been back on the med only about three weeks though. I eat a couple of bites of sauerkraut before taking it (it is either a pre or probiotics I understand) then make sure I drink at least six to eight ounces of water. I had lost my appetite previously and wasn’t eating much of anything. So far now I have a pretty normal appetite so I make sure to eat before taking the med.

    • #25108
      Thom
      Participant

      BOEHRINGER INGLEHIEM has their main office and some laboratories located where I live, Offices in Danbury and Ridgefield,  CT

       

    • #25111
      Mark Koziol
      Keymaster

      Hello Carol, thank you for the suggestion of eating sauerkraut. I never thought about that food but when you bring the pre and probiotics into the equation I think you may have come across a gem of a find. The scientific base for this makes a lot of sense. Thank you, Mark.

    • #25120
      Piet Potgieter
      Participant

      Nothing wrong with Cipla´s generic of Esbriet made in India. I have been taking it for the last 3 years. Now we may not import it any more as Boeringer Ingleheim registered their Ofev in South Africa and it is unaffordable, even for my medical insurance.   Therefore,  Boeringher Ingleheim are effectively passing the death senctence on to all South African ipf sufferers.  I wrote to their office in Johannesburg, but no reply.

      Our currency, the rand, used to be worth more than the American dollar. Now it is 7 US cents. You can guess why,

    • #25129

      Oh Gosh, Piet: will you still be able to obtain the generic version of Esbriet you’re on? I hope so!
      Charlene.

    • #25130

      There is no way to import it?  You are absolutely right. There is no problem with the Pirfenidone(generic version of Esbriet)that my husband was on for 4 years.

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