I started doing research on treatments and how I can handle the cost, since our insurance does not cover anything.
We are doing the bone marrow this week and we will know for sure, but our doctor assumes Ibrutinib, combination or FCR, I prefer the first. However the cost is insane, I found many websites selling online,, especially from India. Do you have any idea why the price is lower there and did anyone tried buying?
Hi Paula. I know nothing about Ibrutinib from India. However, I do know that a huge interest in Indian generic versions of the new Hepatitis C drugs developed in 2014-2015 when Sovaldi & Harvoni (brand names) were the most expensive pills in the world. India was selling generic versions of same thing for literally 1/100 of the US price. People were travelling to India initially to get the generic version. But then mail-order systems opened up. These drugs were perfectly fine. They were the real deal. Many many people were cured of Hepatitis C by buying the Indian generic versions when their own insurance companies in US would not cover the drugs, which cost $1,000 per pill (Sovaldi) in US & Canada. I would have gone the generic route with Indian drugs if I hadn't gotten into a clinical trial for Harvoni, which cured me of Hep C.
That may not have any bearing on the legitimacy of the Ibrutinib sold from India. But India does have a reputation for selling generic versions of very expensive new drugs.
One of the drugs is produced by Bangladeshi company, while the other is original by Pharmacyclics and just the cost is much lower, which is intriguing.
I really hope this is legitimate, meanwhile I continue the research. It would be great if there is someone with experience purchasing CLL medications without insurance.
Also, I am reading mixed comments about if Ibrutinib is taken for life or just several years, any info on that?
The concept with Ibrutinib is that you need to take it daily for rest of your life. However in reality the likelihood is that clonal evolution will occur after some time (a few years maybe) - meaning you will become resistant, and it will no longer work, at which point your doctor would likely switch you to a different drug. But Ibrutinib is still new enough that not everything is known. Perhaps some people won't experience clonal evolution on it. Perhaps some people may be able to get a durable remission after enough time on Ibrutinib - a remission that would hold even if the Ibrutinib is stopped.
I have been on Ibrutinib one year now. It controls my CLL really well. But the 2 times I had a short stoppage, my CLL symptoms came back very quickly.
Hi i m using ibrutinib . It is made of everst company of bangladesh. It price is 600 dollar per pkt of 120 capsul. I started using 15 days ago. I am felling batter result.
Acalabrutinib is still awaiting FDA approval. I suggest you ask for feedback from our members in the trial in a separate post. I wouldn't expect the price (when approved) to be much different, but if you qualify for the trial, then you'll gain access to the drug without having to worry about either its cost or manufacturing quality.
That's the sad reality many of us face, unfortunately. It's tough hearing about all these new drugs, knowing we can't access them.
May I suggest that you at least change your username to add _UAE to the end and perhaps include your country in your profile? That will improve the relevance of replies to you. Here's how you do it:
The wholesale acquisition cost for Calquence is about $14,260 per month, for MCL dosing.. its not FDA approved for CLL, when it does get approval it will likely be for high risk, and or second line use.
Paula - every time my Ibrutinib arrives I have 2 emotions. I’m so grateful I have the best insurance because the the cost every 28 days is $10,500 and then really mad that the cost is $10,500.
I understand that many drug companies are having drugs researched in India for next to nothing, then charging through the roof to insurance companies and patients.
If you are in the states, the specialty pharmacy is great about finding grants to help pay for this drug.
In India, ibrutinib is imported from US and no generic drug is available at present. So no online store can deliver ibrutinib to US from India through legal process.
Heard about Bangladeshi version of ibrutinib, it's very cheap but not sure about results.
I cannot vouch for the quality of the ibrutinib from India but I can tell you that prescription drugs are far cheaper everywhere else. The U.S. has the highest drug prices in the world because of our grossly inefficient and byzantine health care system that prohibits insurers and Medicare from negotiating drug prices, so drug companies get away with charging whatever they want.
I travel to India a couple of times a year. That's where I buy standard antibiotics, for example, as back-up for those times when getting access to a white-coat for a prescription is impossible. Antibiotics are available in India over the counter and at a tiny cost. However, unless I buy a sealed box from a known Western pharma company and check thoroughly for the security holograms then I know it's a 'knock-off.' [There ARE Indian pharma-factories making legitimate generics for drugs that have been in Western use for at least a decade.]
But ... No ibrutinib is made in India, nor is it made in Bangladesh (previously E. Pakistan). Any representation that the drug has been created in those countries is clearly false.
Now ... every non-Western country is allowed to import at minimal cost <some> high-cost Western medications for use with their own populations. So <if> it is possible that you can buy legitimate Ibrutinib at bargain prices outside the West then you know that what's happening is that the drug has been stolen or redirected away from the patients to whom it was intended.
Going outside normal supply chain, be prepared to loose your money and never receive a thing... Patients never talk about these shadow grey market companies, because they don't want people to know they were taken. Same applies to Canadian pharamacies... they are in India, not Canada.
Cancer drug distribution are very tightly controlled, through specialty pharmacies.
Ask for help from the company Pharamcyclics if you need financial help.. there are programs like
I assume, that the cost of drugs in india is lower, because of their disposable income. The price in Turkey for Imbruvica is also bearable compared to EU, but to get a prescription is way too hard.
I won't give up and Im sure when we decide on the therapy i will find a way and will update you all!
It simply makes me so sad, that the right to live should be determined by your income. Since we are experiencing the sickness, it opened my eyes for all the sorrow going on around, my heart feels so heavy.
As has been mentioned several times above, counterfeit drugs are a huge and growing problem. The cheaper prices you are quoted for CLL drugs are not likely to be for the genuine article. Scammers sadly know that they have a lucrative market peddling their fake product to desperate people:
A couple of years ago fake rituxan, got into the legitimate supply chain, so Roche has closed all loop holes and now uses a system of cypher encoding, that tracks a Rituxan from factor to patient...
I see a looming problem when biosimilars hit the market soon...is it the real thing?
I am from india. I cannot access the url u have sent. Can u send me costs mentioned?.
I have been raising this concern for some time bcz I want to avoid FCR ,( if I ever get to treatment stage) and constantly hope drastic reduction in ibrutinib prices.
Pls let us know result of your research about ibrutinib.
we have same situation. my father has Cll and he has been taking Ibrutinib 140 mg ( Janssen) since January 2017 . now he is good but the main problem is the treatment price . so i tried to find alternative pharmaceutical company . i see BONHOA web site and i asked them about 3 brands of ibrutinib ( LUCIUS & BEACON & JULPHAR ) . he told me the BEACON (Bangladeshi Co.) is better . but i do not know is realy this alternatives as effective Janssen ? please inform me If you get more information .
Contact information removed for your privacy - Admin
In some countries as the new year approaches you can switch your health insurance provider. Is that possible for you? Maybe a different company has better coverage.
While it is remotely possible that the three different drugs on that site listed as Imbruvica / Ibrutinib alternatives, might actually contain the active ingredient, it is very unlikely. Quality control and authenticity is a real problem with imitations produced in China. Whether fake Rolex watches or drugs, there is no way to determine if those will work.
Hi Paula, i was really surprised to find a doctor in the UAE prescribing Ibrutinib. Can you please let me know who is your medical provider? I'm interested to go myself.
I'm living in the UAE now for the past 20 years. Recently I've been diagnosed with CLL . While on watch & wait, I am wondering how I will be able to cover Ibritinib if /when the time comes. Yesterday I found a "Indian Pharma Network" online. I exchanged a few messages with them on Whatsapp. They are selling Imbruvica 140mg 90 tablets @ $2,500. About USD 800 per month. The print on the box says imported from Johnson & Johnson Privet Limited.
Hi Everyone,I thought I'd bring you up to speed with my father treatment on Ibrutinib which he has started last June.I went to see his consultant to discuss his recent CTscan and the ongoing progress on Ibrutinib!The news I got was fantastic.I was told that all the tumours throughout his body on which there were many had almost all disappeared, I can only tell you all that since he went onto Ibrutinib he feels better. Just i was little concerned with price of this drug since we don't have any insurance. I don't know for how long this may last,but I'm truly grateful for this medicine. As just i got to know that there are newly generic ibrutinib arrived in India which is very affordable than brand one. I have bought this brand Brand reference deleted as product safety is uncertain and current legal challenge of patent infringement may mean loss of supply - Admin. And, My father feels the same results on this generic. Hope i will be continue on this. i have already used Indian generic so i am comfortable now about the cost and quality. May I wish you all well will sugeest you to try this generic affordable ibrutinib. I wish for you the same results.
Yes dear! I know, It's only patient forum. It's not any kind of advertisement place and I am also not doing any fake review or promoting anyone here. I just came across to this post so i thought patient should to know about this indian brand who can't afford expensive Ibrutinib like me. Yeah, you are right this is launched just a month ago only and i get it recently this month. Earlier i used to take imbruvica for my father treatment.
William, I am doing due diligence on the Indian pharma providers currently selling Imbruvica. I'm mistrustful of the marketing peoples claims. In the days ahead, after I gather together enough contacts (doctors, pharmacists, clinicians and patient referrals) I will travel to India to 'walk the floor' as they say. To try to reassure myself as much as possible that I will be getting the correct molecule from the services providers there. As we know, even a US 150 bottle to pills is enough of an incentive to cheat and use adulterated product. I want to get better. Not worse. I'll be happy to share my results with the group here when done.
From December 2019 Economic Times, with my emphasis, "The patent for the drug (Ibrutinib) is held by Pharmacyclics for three to four more years in India.
:
Sources informed ET (Economic Times) that Pharmacyclics had filed for an injunction petition in Delhi High Court but no clear decision was handed out. Natco was directed to maintain data for its inventory and stocks sold."
I can't find any information on any clinical trial on Ibrunat, the Ibrutinib "copy". That Pharmacyclics had filed for an injunction petition and that Natco was directed to maintain data for its inventory and stocks sold implies to me that anyone taking Ibrunat is facing two potential risks:
1) Drug equivalence
2) Sudden loss of supply
We know from member reports that those who stop taking Ibrutinib before U-MRD risk having their CLL come roaring back.
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