Watching and waiting?: Hi all I am a kiwi living... - CLL Support

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Watching and waiting?

Kiwidi
Kiwidi

Hi all

I am a kiwi living in what people believe to be a paradise- yes, New Zealand! It is in most respects but unfortunately not in terms of funding for required drugs for things like CLL.

We have a support group set up and there are a number of people struggling because of the high cost of the drugs required to help them maintain quality of life.

I am still in the watch and wait stage but there are several people within our network who require Ibrutinib. The cost for them to procure it here would be $10000 per month.

I am wondering if anyone on this forum has had any experience of directly importing this drug from India. I recently attended a meeting of people with blood cancer in my home town and 6/10 were successfully importing the drug they required from India with a script and a letter to NZ Customs. The price is a fraction of the price it would cost here in NZ. At this time it is completely legal.

This is a plea- if anyone has any information about this please, please let me know by way of the wonderful website.

Diane

34 Replies
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AussieNeil
AussieNeilAdministrator

Hi Diane,

The issue here is whether the Ibrutinib sourced from India is the genuine drug, supplied without infringing any patents or other legal rights. It will be interesting to find out.

Neil

Kiwidi
Kiwidi in reply to AussieNeil

Thank you for your prompt reply. The people in the blood cancer group I went to last week are on lenadelimide (sp?)for Myeloma and have been for quite some time. It is working for them. I know it could be a bit dodgy which is why it would be good to connect with someone who has successfully imported Ibrutinib. NZ is so far behind the 8 ball. We had a submission to the Select Health Committee ‘heard’ on Wednesday and it was a complete debacle. Most of us can’t afford health insurance any more-we don’t have access to the schemes you have in Australia. Very sad that your rate of survival is dependant on your geographical location and your economic status

Kiwidi
Kiwidi in reply to Kiwidi

And their Specialist is pointing them in that direction so he must think it is a reliable source

AussieNeil
AussieNeilAdministrator in reply to Kiwidi

Lenalidomide was approved in the USA in 2005 for Multiple Myeloma and is derived from thalidomide, a very old drug. (Its use for CLL proved disappointing). I'm not sure that the situation with lenalidomide is applicable with respect to patent protection times for a much newer drug such as Ibrutinib.

Australia is in a similar situation to New Zealand. While access to non chemo treatments for CLL has thankfully improved lately, lower cost chemoimmunotherapy is still the default treatment unless you are 17p deleted.

Neil

Kiwidi
Kiwidi in reply to AussieNeil

Does that apply to people who are older and not 17p deleted in Australia?

If so it would definitely be good to find a reliable source in India.

AussieNeil
AussieNeilAdministrator in reply to Kiwidi

cllsociety.org/2017/10/ibru...

and per nps.org.au/australian-presc...

Ibrutinib has been registered for the following indications:

- first line for chronic lymphocytic leukaemia in patients with the 17p deletion

- second line for chronic lymphocytic leukaemia and small lymphocytic lymphoma (after at least one previous therapy)

Age isn't mentioned :(

(You can edit your posts/replies via the 'More v'/Edit option)

Kiwidi
Kiwidi in reply to AussieNeil

That is interesting. In NZ they are saying ( I think) that those over 70 should not be exposed to chemo but are not funding any of the alternatives ( except maybe venetoclax (sp) which is only in the pipeline and which only works in some cases???? Maybe in my case a little knowledge is a dangerous thing?

AussieNeil
AussieNeilAdministrator in reply to Kiwidi

For chemoimmunotherapy CLL treatments, there's a nominal age of 65 dividing FCR and BR. Venetoclax needs to be carefully administed, because it kills CLL cells so effectively. It is way more impressive in terms of overall response rate than other non-chemo targeted therapies.

Neil

Kiwidi
Kiwidi in reply to AussieNeil

Thank you so much for your input Neil. I have learnt a lot. Maybe NZ is not so far behind after all😀

seelel
seelel in reply to Kiwidi

I railed against the thought of chemotherapy for years and told my haematologist that I'm hanging out for a non-chemo solution. So a couple of years ago she told me that Ibrutinib had been made available for patients over the age of 70, so if I need treatment one day then it doesn't have to be FCR any more. This is under Medicare.

Kiwidi
Kiwidi in reply to seelel

That's awesome! We need to get the same thing in NZ sooner rather than later. Good luck!

1935husband
1935husband in reply to seelel

I am using an Advantage Medicare program with zero monthly premiums.

IB copay is $650.00 after the the first month of $2500 copay.

I can’t image Jansen would allow a bootleg version of there drug to be made and sold. I wouldn’t believe it’s real. I think it would be very dangerous to take an unknown pill. Just my opinion. Best wishes John

Kiwidi
Kiwidi in reply to Ironj

I know it is scary but if you are between a rock and a hard place what do you do?

Ironj
Ironj in reply to Kiwidi

I just don’t know .. move to a location that offers it. I know it’s a radical though but something are worth doing when you have no opinions. Very sad but reality.

Kiwidi
Kiwidi in reply to Ironj

It is an option but it's a matter of finding the right place. I have lived in many different places-maybe an Exotic Marigold Hotel would be an option?

I see 4 clinical trials for CLL that are in New Zealand. Some of which use novel agents.

Maybe keep an eye on clinicaltrials.gov for what drugs and institutions are available? Could reduce cost burden for a while if fortunate enough.

Kiwidi
Kiwidi in reply to DriedSeaweed

Yes I know that. Probably I don't qualify at the moment but will discuss with my Dr. Thank you😀

I would be happy to do that having happily lived in many different countries over all over the world. I wonder though how easy it is to access as an expat? We have talked about the Exotic Marigold Hotel as an option.

Hi Kiwidi from another Kiwi

I've been on Ibrutinib for several years - 17p- , via my Wellington Haematologist, accessed free on I think compassionate grounds, through the Australian arm of Janssen, Macquarie Park, NSW.

i'm on the list for Venetoclax fairly soon I believe, now Pharmac has approved it and as I am becoming refractory to the Ibrutinib.

Are you on a CLL Advocacy group here in NZ?

Kiwidi
Kiwidi in reply to morepork

Yes I am a member of a CLL Advocacy group here in NZ. Are you? There is a relatively new website set up by Neil Graham who is a very well informed doctor. He has had CLL for almost 20 years. He was also on the ibrutinib trial and had it prescribed on compassionate grounds. It seems that this is not possible any more and he put together a submission about funding of ibrutinib to the Select Health Committee which was heard (along with lots of others) on Wednesday. His reasoning is that CLL is not a ‘one size fits all’ cancer and that if venetoclax is funded ibrutinib should also be.

AdrianUK
AdrianUK in reply to Kiwidi

If venetoclax is funded in NZ can you just take that in the meantime? It’s has some advantages over ibrutinib eg getting to undetected status. Here in the uk non 17pdel/TP53 mutated get given FCR first then if that doesn’t work or if you relapse we get venetoclax or ibrutinib free.

Kiwidi
Kiwidi in reply to AdrianUK

Venetoclax has only just been funded here in NZ. FDR is not something I want to go through if I can avoid it. Hopefully by the time I need treatment something will be sorted. It’s amazing how quickly they are discovering new treatments. Thanks for your interest.

AdrianUK
AdrianUK in reply to Kiwidi

The other option of doing a trial is a good one to consider also. Hopefully you won’t need treatment for years if ever.

Kiwidi
Kiwidi in reply to AdrianUK

Me too. Thank you😀

morepork
morepork in reply to Kiwidi

In reply to your question

Yes I explored the NZ CLL advocacy group but I wasn't sure sure if I really fitted its aims so haven't formally signed up to the members area.

My ibrutinib dosage has brought up problematic cardiac issues including atrial fibrillation - apparently not uncommon with this drug.

Kiwidi
Kiwidi in reply to morepork

I have found the site great for networking and for linking to sites such as this and Patient Portal. I fully understand that it doesn’t suit everyone but because I am relatively isolated in Nelson( still haven’t found anyone with CLL) I find it a good way to keep in touch with new developments. Thanks for the info about cardiac issues being a side effect of taking Ibrutinib.

. Kia kaha!

Hi Kiwidi, What area of NZ do you live in? I'm in Auckland and on a clinical trial at North Shore Hospital for zanubrutinib (a second-generation ibrutinib).

I've been on it for almost 4 years, and it has been good for me so far (apart from crippling fatigue for the first two years), especially since I have 17p deletion.

In 2015, I tried to obtain ibrutinib from India but I couldn't find any source that was cheaper than buying it in NZ.

Have others in your group who need ibrutinib checked out clinical trials around the country?

Kiwidi
Kiwidi in reply to MrMidnight

Thanks for your reply. I live in Nelson. I am not at the stage yet where I need treatment. One of the ladies I network with has had a month on Ibrutinib and can’t believe the difference it has made. Her haematologist supplied 2 months worth for her and she now has only 24 days to find another source. There is a pharmacy in Palmerston North that imports it from India. They will supply it at $2500 a month which is a bit better. I’ll suggest to her that she looks for a clinical trial.

MrMidnight
MrMidnight in reply to Kiwidi

Gee, $2500 a month is way better than the usual figure quoted of around $10,000! But it's still an awful lot of money...

I can't understand how a haematologist would give her two months' supply... and then let her fund the rest.

I see there is a clinical trial of Venetoclax in Wellington for relapsed/refractory CLL, which I assume covers her situation. Details are at: clinicaltrials.gov/ct2/show...

Kiwidi
Kiwidi in reply to MrMidnight

This is her first round of treatment. I’m not sure how she came to get 2 months supply- something to do with over prescription for other patients. I haven’t asked too many questions. I don’t think she would be eligible for that trial not having had any other treatment.

PP_Kiwi
PP_Kiwi in reply to Kiwidi

Can you tell me the name of the pharmacy in Palmerston North? My haematologist has told me it exists, but he is not allowed to pass on the name. Thanks.

I'm assuming she doesn't have 17p — in which case, she would normally be treated with FCR as first-line treatment. Is she too old or frail to undergo chemo like that?

Kiwidi
Kiwidi in reply to MrMidnight

I’m not sure. She is around 70. I thought there was a move away from using FCR as first line treatment especially in older patients. Not sure which ‘strain’ she is either. I will ask her.

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