My father has CLL 17p since 2013. He has to take imbruvica for all his life. We live on Chile and the cost of the 120 capsules is overwhelming (11000 USD) and because it is a very uncommon disease here in Chile, there is no health plan support for buying it.
I found out that in India, this drug is sell as Ibrunat (from NATCO company), with an astonishing cost of 215 USD the 30 capsules! Does anybody has any experience of using India´s medicament? Here are some links and pictures of Ibrunat:
I also want to mention how valuable is your support group. In my country there is no network for CLL, your community generates updated information and a hope sharing your experience with real cases. CONGRATULATIONS
Thanks!!!
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Calita
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I haven’t used it personally as I am still in ‘watch and wait’ but know someone who has been importing it into NZ from India for about 9 months. His specialist tested it and found it to be identical to the original. Exactly the same!
The Indian Pharmacy Bonhoa sells several Ibrutinib preparations. Do you know which is the one that was tested and found to be the same with the authentic one ?
HI Kiwi... I too am on W @ W but may soon need treatment in Auckland for Atypical CLL which is creating proteins that are damaging my kidney even though my CLL is Stage 0. Is there a CLL specialist in Auckland? I would prefer to avoid the full 6 cycles of Chemo opting for time limited Rituximab and Venetoclax OR 3 cycles of FCR and Ibrutinib as in recent trials but of course I would need a very open minded Dr who reads these trials and to buy them in India. Can you tell me how your friends Doctor tested it? A crude test would be its impact as either drug, if good, would have some impact almost always
I am not sure that we have many CLL Specialists in NZ. Dr Robert Weinkove at the Malaghan Institute in Wellington seems to be the closest although I think he also deals with other blood cancers. Are you a member of the NZ CLL AdvocatesGroup? There are a number of people in that group who have more experience than me. It might be easier for us to communicate if you joined that. Just not sure how to make direct contact on this amazing site. Take care in the meantime.
I appreciate the situation that you are in, but am sorry to say that the world of generic drugs is problematic. Especially from India and China.
It is an area where huge profits can be made and although there are some ethical generic manufacturers in those countries, the market is also tainted with many manufacturers who buy the cheapest ingredients (often sub-standard) and manufacture the drug without any regulatory constraints. They fraudulently produce laboratory data in order to claim bio-equivalence and numerous other methods of producing and distributing drugs that have in many cases been proven not to work at all.
An important factor is that the original brand name drug goes through stringent clinical trials on humans, whereas generic drugs don't. They only have to apply for approval using manufacturing data.
A book, 'Bottle of Lies' was published last year exposing the generic industry and the inability of the FDA in the US to properly monitor and validate the manufacture of these drugs.
My wife's GP told her that she will not prescribe generics as she has had so many problems with them.
As far as what Kiwidi has said - the drugs tested may have been a 1st batch that they manufacture as bio-equivalent, and once a market has been established, they will begin to dispatch the poor quality product that has been much cheaper to produce and hence provide the profit margin.
In Australia, health care is virtually free, and the government does everything it can to keep costs down. They do not however have Ibrunat on their pharmaceutical list. They still use the original brand of Ibrutinib at high cost.
Despite what I have said, there is still the possibility that Ibrunat is bio-equivalent to the original and therefore may be effective. If there is any way that you can work closely with your father and his doctor on this matter, it still may be an option.
I cannot advise you in any way other than to proceed with caution.
In NZ ibrutinib costs $12000NZ per month. I belong to a blood cancer group where many of the members have been importing lenalidomide for their Multiple Myeloma from India for several years. They are still alive to tell their stories and sometimes when you are between a rock and a hard place that’s what you have to do!
unlike phony stuff i read the article andit appears that indian courts routinely ignore worldwide patent laws in the case of super expensive drugs. there is no way to force a country to honor others laws, my opinion is they would work like original
My family is in the same situation .... The original drug is very expensive ... I m from Egypt ..... I would like to know too if this drug is effective
How would one test this? Obtain a brand name sample and the generic sample and have a compounding pharmacy analyze them? Or would one need a special lab?
It is very frustrating sitting here reading everyone’s posts and knowing that even though we live in a developed, highly regarded country our government doesn’t put quality or even the saving of lives as a top priority. We have to resort to importing maybe(?) inferior drugs from other less developed countries. Some of us take the gamble and because of our mentality become the guinea pigs who prove that generic drugs do work ( or maybe don’t!) I love going to my blood cancer group meetings where the members say ‘I am here today to be with my family and friends! ‘ And for some of them that is after 10 years of importing their 'drug of choice'When I need it if it is not funded I will do the same. What have I got to lose?
Hi, I contacted the Indian pharmacies and no one can confirm if natco ibrunat has been approved or has license or quality certificates, I would like to make sure that the ibrunat is not fake, can you please help me
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Best front-line treatment(non-chemo) for CLL with no 17p deleton/TP53?
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