Inbrutinib in Canada

[max64]

Is this drug covered for seniors as a first line treatment in the province of Ontario?

[Cllcanada Top Poster CURE Hero]

No... second line only with some exceptions of patients with 17p- deleted... we are waiting for broader funding... like BC, Yukon and Quebec. There might be access through your private insurance, but you would need to talk to the company.

You can follow funding talks here

cadth.ca/sites/default/file...

~chris

[max64 in reply to Cllcanada]

So as of now are the only choices chemo or taking part in a study? I guess you could also pay for the drug if you were a gazillionaire.

[Cllcanada Top Poster CURE Hero in reply to max64]

I think for patients not suitable for fludarabine treatments then Gazyva abd chlorambucil is funded first line.

I don't think we will see Imbruvica (ibrutinib) fully funded firstline in Ontario... I think it will be similar to BC, just my gut feeling. Special cases primiarliy.

There are a few clinical trials, but they tend to be for second line ... here are the current crop

canadiancancertrials.ca/def...

~chris

[max64 in reply to Cllcanada]

Thank you Chris. Have you ever heard of people going to the States to participate in trials?

[Cllcanada Top Poster CURE Hero in reply to max64]

Yes, it is doeable, but it can be very expensive, it depends on what expenses the trials cover...

Since we Canucks have no health insurance in the U.S. we pay full retail for tests, scans etc... out of pocket. This can add up.

There is one exception and that is the NIH in Bethesda.. they will take anyone into trials at no cost to the patient. The obvious expenses are travel and accomodation.

I have known perhaps a dozen CLLers who have gone this route, but 10 years ago they had many CLL trials... not certain how many firstline trials they are running now...

Roswell Park is in driving distance of the GTA and I have a friend who was in a lenalidomide trial there, he had no problems doing it...

Both the Mayo and Fred Hutch are fairly easy to reach, as is OSU.

~chris

[max64 in reply to Cllcanada]

Thanks Chris...that's very good to know

[max64 in reply to Cllcanada]

Thank you for the link. I hope it gets approved soon.

[kohelet]

I am on Ibrutinib. Why do you prefer it as a first line? Yes, it is convenient but you have to take it indefinitely and sooner or later it fails. Better try something else first and keep the ibrutinib option open for later if necessary.

[max64 in reply to kohelet]

I see your point but want to avoid chemotherapy. I'm 68 and not in the best of health. Do you live in Ontario?

[Cllcanada Top Poster CURE Hero in reply to max64]

Your other choice in Ontario would be Gazyva and chlorambucil used in combination...

The chlorambucil is chemo however... although old and weak, like me...

If you have private insurance there there might be other options...

~chris

[max64 in reply to Cllcanada]

Thanks Chris...I've searched that combination and it seems like a gentler, easier form of chemo to tolerate...if there is such a thing.

[ikahan in reply to max64]

It's concerning to me that in Canada, CLL patients cannot get tested for their mutational status, and are not given access to ibrutinib if they are unmutated. My husband is unmutated (we had to get testing in the US) and is now receiving ibrutinib from Dr Byrd in Ohio.

In Ontario, you must get FCR unless you are 17 p deleted. But unmutated patients have a high relapse rate with FCR, and FCR can cause further mutations that worsen prognosis and cause treatment resistance.

Provinces should allow testing for mutational status, and cover ibrutinib for patients who are unmutated. This is based on very strong evidence. Yes it will be expensive, but only a minority of patients are unmutated, and if our governments become a bit less corrupt and wasteful they should be able to cover life-saving medications. All the best, Ileana

[Cllcanada Top Poster CURE Hero in reply to ikahan]

Its currently being looked at, both patients and doctors are involved to get IGHV and TP53 testing started...

Still don't have rituxan fully apporoved for first and second line and that has been in the works for 6 years... 🤤

Rituxan and bendamustine only on private insurance...

Lots to be done...

~chris

[max64 in reply to Cllcanada]

How does Rituxan and bendamustine compare to Gazyva and chlorambucil ? Have they been compared in any studies?

[Cllcanada Top Poster CURE Hero in reply to max64]

No... not compared... FCR and bendamustine/rituxan [BR] have been compared...

bendamustine/rituxan [BR] is available first line in Ontario, but not second line. .

Bendamustine is Health Canada approved for firstline

cancercare.on.ca/CCO_DrugFo...

CCO benda/RITUX

cancercare.on.ca/common/pag...

Generally ... Gazyva is more powerful than rituxan... that has been established, and bendamustine is more powerful than chlorambucil... but more toxic.

If you are interested in these things the CCO drug formulary is online

cancercare.on.ca/toolbox/dr...

There are other programmes as well, my drug is covered under EAP, Exceptional Access Programme...

health.gov.on.ca/en/pro/pro...

Check with you hemetologist, they deal with the vagaries of the funding system every day.

~chris

[kohelet in reply to max64]

Yes. Toronto

[max64 in reply to kohelet]

Thanks...do you have to pay out of pocket for the ibrutinib? I've read that they are doing trials on cutting back the dosage as well as discontinuation at some point.

[kohelet in reply to max64]

No. Everything is free. I even think you don't have to be a senior.

[Cllcanada Top Poster CURE Hero in reply to kohelet]

Not free.. but we paid for in advance... or portions of it...managed healthcare

You don't have to be a senior...

Imbruvica (ibrutinib) is only funded second line.. or special cases like 17p deleted. It may change to a broader use.

[max64 in reply to Cllcanada]

Sorry...I don't know what you mean by.. "Not free.. but we paid for in advance... or portions of it...managed healthcare"

[Cllcanada Top Poster CURE Hero in reply to max64]

In Ontario we pay into OHIP as do our employers for our entire working life... that covers the cost of our medical care... so its not free.. but paid for in advance...

When we need treatment it is provided at no cost...

Its health insurance if you wish, but its not free.. it just looks free...