ibrutinib it is expensive?

[Sagarcanada]

When CLL people need treatment mostly are taking ibrutinib which is good medicine but I am wondering to check its price. We live in Canada and we are immigrants from SE Asia. Our economy is not strong and the price of ibrutinib per capsule is very high ca. 100 CAD and we don't have insurance either except for the Ontario health card. I am not quite sure whether my wife may need or not treatments as she is in W & W situation. If she needs medication how can we manage the medicine because we can not efforts it which is worrying me? I do not know? I am not very familiar with the treatment system of CLL in Canada. I would be grateful if anyone of you could answer me?

[5959]

I live in Ontario, Canada and have been on ibrutinib since Dec 2019. The cost is just over $9,000 per month at three pills per day. I am covered by work insurance.

If you don’t have personal insurance, don’t worry. My oncologist told me that nobody pays for this drug. If you don’t have insurance, then Trillium (Ontario gov’t) pays a portion based on your income and then the manufacturer would pay a portion. I suspect each province is similar but I’m not sure.

It will all fall into place when and if the time comes, so please don’t worry about payment.

[Sagarcanada in reply to 5959]

Thanks, lots and we also live in Ontario.

[5959 in reply to Sagarcanada]

Your welcome. You have been provided great information here and I learned some information as well. You are wise to research so you understand your options.

[AM0000]

Also in Canada and also exploring this as a treatment for my mom. She has work insurance - for now but concerned about what happens after she retires. Apparently it's not covered as a first line treatment, meaning if you get another treatment first and it stops working, then the government will pay for it. But that's not what we want. We want the best available treatment of course. So what 5959 sad is correct. There will be a way to get it covered. But not sure if that applies once it's a second line treatment.

[Sagarcanada in reply to AM0000]

Thanks for your information which is very useful to me.

[Emgeegee in reply to AM0000]

This is VERY surprising to me. In Saskatchewan, ibrutinib is completely covered by our provincial health plan (no cost to patient) - at least as a front line treatment for CLL. I have also read on this forum about there being a cost for patients in Quebec, and now I learn that there may be a cost for patients in Ontario as well. I would not have imagined that patients in different provinces would have such different coverage! It doesn’t seem fair.....?

[rvles]

In Ontario, Ibrutinib is paid for by the government health program for first time treatment under certain conditions, namely one of the following:

• chromosome 17p deletion; OR

• TP 53 mutation; OR

• unmutated immunoglobulin heavy chain variable region (IgHV)

You can find information on funding of many CLL treatments for each province on the CLL Canada website here: cllcanada.org/treatment-acc... under What does your province cover.

You can also find information for patients on how drug coverage works in Ontario on the site of the Oncology Drug Access Navigators of Ontario here: odano.ca/resources/

You could check with an organization that supports immigrants to find out whether your immigration status affects your access to health care in Ontario . If you have a health card, I imagine that you should have the same coverage as any citizen, but it would be worth checking to make sure.

[AM0000]

How dies one go about requesting this:

• chromosome 17p deletion; OR

• TP 53 mutation; OR

• unmutated immunoglobulin heavy chain variable region (IgHV)

My mom for example, goes to a Hem/onc ...trying to get her to see a specialist...but it's been so difficult so far. Not sure if this testing is done at a hospital and how to request it. This is why I dislike going to a general hematologist, they never tell you about any of this. Literally all our knowledge and info comes from people like you

[SofiaDeo in reply to AM0000]

These are lab tests which I do not know how Canada deals with. In the US, the flow cytometry and mutation tests can be ordered as an outpatient by a regular hematologist-oncologist. Some hem-onc may prefer not to do bone marrow biopsy specimens in their office & may only order blood. Again, I do not know how Canada handles this, I am commenting on US only. Our insurance here pays according to the diagnosis code attached to the test. Some insurances may require other tests be done & results obtained, before approving these specific tests.

Here are some lab links explaining how they are collected & ordered in the US:

cllsociety.org/2017/01/doct...

neogenomics.com/test-menu/t...

ltd.aruplab.com/Tests/Pub/0...

I wouldn't say the docs never tell you any of this. They are not educators, they are diagnosticians. If you are knowledgable about the tests and can discuss them using the terminology, I have found that they can and will discuss. But it's difficult to jump into a technical medical discussion with a layperson, especially in settings where the patient load is heavy. Some docs enjoy being an educator as well as diagnosing & treating disease, and will discuss things in detail if we learn enough to understand the terminology used. But any doc is likely to do more discussion if you learn the lingo. So I recommend going to some of the Pinned Posts here if you haven't, as well as more of the posts from CLL Society in the first link. Once you have a basic understanding of the terminology & what tests are used for what, I am sure the local person will respond. They just aren't going to jump into technical explanations without us, the patient, indicating we are able to follow & understand at least somewhat.

[htam]

A drug such ibrutinib mainly work in mechanism by Bruton's tyrosine kinase,

yes this kind of drug unfortunately expensive , but for nowadays this the best and first choice treatment ( depend in the case and the patient symptoms ) but highly efficient and will improve you health

many drug use to CLL but there is many strategies to decide the therapy consult you specialist he will help you probably ! I hope :))

[Sagarcanada in reply to htam]

thanks for answer