I am in the process of importing Natco Ibrunat ( ibrutinib generic) from India for personal use. I have a consulting hospital heamtolgist prescription to include with the order to be Fedex-ed to NZ. I intend to purchase from Kris Industries. I was wondering if anyone could recommend a reliable supplier for Natco Ibrunat and any tips on how to reduce the wait time with customs.
My local pharmacy quoted me NZ20,000,00 per month. India seems to be about NZ$1,500 pm.
Thanks in advance for any information.
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tonysa
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Welcome, Tonysa. You'll find plenty of information and support here. When you get a chance, it'd be great if you could update your profile to tell us what you know about your CLL. That will help people provide you with more targeted answers to any other questions you might have.
I'm sorry I don't have any information about importing generic ibrutinib into NZ from India. However, I want to draw your attention to a clinical trial that might interest you and that I believe is being offered in New Zealand. It is testing a new BCL2 inhibitor known as BGB-11417, a drug that works in a very similar way to the approved drug venetoclax.
"The purpose of this study is to determine the safety, tolerability; and to define the maximum tolerated dose (MTD) and Recommended Phase 2 Dose (RP2D); and to evaluate the safety and tolerability of the ramp-up dosing schedule and at the RP2D of BGB-11417 monotherapy, and when given in combination with zanubrutinib and obinutuzumab"
It is open to both treatment naive and relapsed/refractory CLL patients who meet the International Workshop on Chronic Lymphocytic Leukemia (IWCLL) criteria for treatment.
The clinicaltrials.gov website indicates that it is currently recruiting patients in Auckland and Wellington.
When you get a chance, it'd be helpful if you could update your profile with some details about your CLL. healthunlocked.com/profile/.... That'll help people target their answers better if you have further questions. Also, as you're new here, I'll draw your attention to our pinned posts where you'll find a lot of helpful information. healthunlocked.com/cllsuppo...
👍 It would also be helpful if you could include roughly when you were diagnosed and what your lymphocyte count was like then as that will indicate how slowly or quickly your CLL has progressed since your diagnosis. Ditto, if there's been a recent rapid rise in your count.
For example, I see your lymphocyte count is currently sitting at just over 100 but that wouldn't, in itself, be a trigger for treatment. However, if it's increased ≥50% over 2 months or you've experienced a lymphocyte doubling time (LDT) <6 months, it could be.
If you have any comorbidities or troubling CLL symptoms you might wish to include them, too, as they can be relevant to treatment decisions. If you've had FISH or other testing (which might not be the case until treatment is approaching), it's also helpful if you can include your CLL markers.
Here's a post with some more information about what to include in your profile and why it's important to update it as things change:
I don't have clear answers to your questions eg customs importing but as a fellow NZer I was interested in your post. I know or knew of other Kiwi's importing this generic ibrutinib so someone of that group may contact you . The prices quoted to you to purchase privately seemed slightly different to what $$ NZ my dermatologist looked at last year - quoting her copy of the NZ Monthly index of Medical Specialities MIMS - mims.co.nz when she said the monthly price quoted there was $4,800.00 NZ per month if paying privately. But of course things may well have changed.
May I ask - Did your haematologist ever mention Venetoclax which seems to be Pharmac funded as first line treatment for some of us CLLers, with Ibrutinb funded only for second line or relapsed CLL as far as I can see. Just curious as various haematologists here seem to have individual preferences.
Hi thanks for your reply. . The Parmac cite says In summary, from 1 December 2019:
venetoclax will be funded, in combination with rituximab, for the treatment of CLL that has relapsed within 36 months of previous treatment, and
venetoclax will be funded as monotherapy for the treatment of previously untreated CLL with a specific genetic mutation (17p deletion or TP53 mutation).
I have not relapsed as I have not had any treatment yet. There is a special waiver, but i did not seem to qualify for that.
it is becoming increasingly common for kiwis to directly import drugs such as ibrutinib from India or Bangladesh. As a result of them not being funded as a first line treatment we and our specialists are being forced into this unfortunate situation
At this very time there is a bill in front of the Health Select Committee that may stop us from even being able to do this. A number of prominent haematologists have said that they are writing prescriptions and helping individuals to import these drugs. It seems that they are the same as those we would have to pay full price for here in NZ ($10000 a month) Clinical trials are all very well but living at the ‘end of the world’ it is often hard to get into them.
You might like to look at the Health Select Committee FB page which has replays of the submissions made about retaining the status quo so we can continue to import the drugs we need- not that that will help you much at this stage.
There is a pharmacy in Palmerston North that provides ibrutinib at $2500 a month if you are interested.
It is a very sad situation indeed for those of us who need these treatments. We have to resort to measures that most of us would prefer not to.
Venetoclax is only funded as a first line treatment if you are TP53 or 17p deleted. I have no idea whether I am or not as I am not afforded the luxury of a FISH test until I develop some serious symptoms. For the rest of us our only option is FCR. At 76 I won’t be going there!
Cook Street Pharmacy (Anthony) is in PN. Private message me if you need more details. Are you a member of the CLL Advocates FB page? There is a lot of discussion about the importation of drugs etc on there.
Hi Yes I am thanks - I wrote to them asking for any information but heard nothing back - I must be missing where to look - are you meaning the FB page?
Yes I mean the Facebook page. You will need to join that group. Unfortunately since the founder of CLLANZ died the other volunteers have been struggling to keep the web page active. I have a zoom session with one of the volunteers today to see what we can do as it is a valuable resource. The FB page was slow to get going but has really gained momentum lately with lots of interesting discussions.
Thanks for all that information Tonya -and good luck with tracking the Palmerston Nth pharmacy. So hard for those of you trying to get affordable access. I can only thank my lucky stars for my haematologist who got me my Ibrutinib free during a manufacturer's short free offer in 2016 (17p - , compassionate grounds, plus them wooing Pharmac at the time ).
Hello, I started using Natco ibrunat 6 weeks ago, 3 pills a day, done blood test 2 weeks ago, no issues, will do another one this week to make sure that all is in order.
I have been taking imbruvica since 2019 while I was under employee insurance. Recently I lost my job and started my own business. When I applied for health insurance the premium was so high therefore I elected to not declare the case and bought the ibrunat from India. Cost for one month supply is approximately 300 USD. If you want to get impruvica at a good price, eygept has a pharmacy on line called eygptian drug store, cost of 120 pills approximately 1950 USD.
I was just wondering what instigated treatment for you firstly, then secondly what difference the drug has made to your life overall, as a working person. 👍
I have 3 months supply of Ibrunat and 3 months of Ibrucent from Bangledesh which is less than 1/2 the price. Just as it arrived ( after paying $600 GST!) I got onto the Zanubrutinib/Venetoclax trial at Auckland Hospital. A Burtinib for 3 months followed by Venetoclax seems to be the recommended first treatment for non high risk. Within 2 days lymph nodes reduced sharply and spleen reducing 2 cm a month. Hoping that ramp up to Venetoclax will result in NDC ! Southern Cross declined to pay on the basis not a chemo drug but following that one up!
OMG! Lucky you to be accepted for that trial! What will you do with your 6 month’s supply of ibrutinib? Whatever you do don’t flush it down the loo. I know a number of people who would be so happy to take it off your hands.
I know I think so too. Maybe ask your haematologist if he has a suggestion as to what you should do with it? He/she may be able to channel in the ‘right direction’ Presumably they provided the prescription and sorted the customs clearance for you?
Hey there! My father is in the same boat. We are considering Ibrunat but also very reluctant for obvious reasons. Any updates on how you've been on Ibrunat? Would mean a lot to hear from you.
yes i did import Ibrunat no problem and a cheaper version from bangladesh. I did not use them because i went on a trial at ak hospital using sonrotoclax with zanubrutinitib. I am now in partial remission
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