Can someone please clear up an issue with IBRUTINIB funding in Ontario
I was under the impression it is now funded for front line treatment naive patients who meet several criteria one of which is unmutated IgVH. However is it via the exceptional access program and therefore has an age requirement of 65 or is it income based because we are having trouble finding out if anyone of any income base or age who is IgVH unmutated but is being started on IB can get funding without using an individual insurance coverage first.
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Kshinester
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For patients with previously untreated chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) who present with one of the following cytogenic markers:
• chromosome 17p deletion; OR
• TP 53 mutation; OR
• unmutated immunoglobulin heavy chain variable region (IgHV)
Renewal criteria : Patient has experienced no disease progression while on Imbruvica therapy. Initial and renewal approval period: 1 year.
Thank you kindly: yes I have reviewed that but we have been told that under 65 nothing applies as ODB doesn’t kick in till 65. And unless you qualify via an income based assessment the other funding bottles don’t apply.
So the question really was is IB funded in Ontario if you are unmutated but under 65
I haven't heard of the over 65 age requirement, never seen this listed in any published guidelines. My understanding is that Ontario is provincially funding Ibrutinib for unmutated IGHV regardless of age but best confirm with your specialist. The below presentation by Dr Fraser also lists Ontario as a funded province in the front line setting-slide 5 with no mention of an age limitation
what about the exceptional access program in Ontario? Would this not pay for Ibrutinib since you meet the criteria of use? Your specialist would have to apply for this on your behalf.
Yes. The EAP does cover it but in order to qualify for the EAP you must eligible to receive medications via ODB in Ontario so either over 65 or enrolled in the Trillium Drug Program which has a means test based on income. And if you have a private health plan that gets exhausted first.
Ultimately IB will be covered but first you must exhaust your private plan which will leave you without any other coverage for other medications it covers and most plans are lifetime limited to numbers that IB will eat up very quickly. Then you must apply to Trillium’s drug plan which with a reasonable income has a deductible that is about 4% of income. So that too isn’t insignificant then you can apply via the EAP... but only after approval and acceptance into the Trillium drug Program. Unless of course you are 65 but if you are in your 50’s you aren’t covered.
I assumed the coverage via the the EAP was universal but it’s not even close. Unless someone has experience with IB recently in Ontario this may not be an easy route for some thing I thought was recently “funded” as front line for CLL unmutated IgVH.
The Ontario Drug Benefit (ODB) program covers most of the cost of the more than 4,400 medications you can search for on this page. You may be covered by Ontario Drug Benefit if you have OHIP coverage and are:
eligible for OHIP+
age 65 or older
living in a long-term care home or a home for special care
receiving professional home and community care services
Your specialist should be able to provide more clarity as to how patients are able to receive access. I know that Ontario generally has more broad approval than other provinces where Ibrutinib front line eligibility is non existent. Just this week Venetoclax was approved in the relapsed setting provincially by Ontario as the first province in Canada. Unfortunately Canada/Europe lag the US market by at least several years and even once drugs are approved there are may restrictions to gain access, very frustrating. Would look into clinical trials on the east coast as an option as well.
This is confusing to me too. I have benefits through my work, but the limit is $10,000/yr. That's like, 1 month of meds.
At 39 years old, I'm not even close to the 65 yr for ODB. And my husband and I make too much for Trillium even though we're basically paycheck to paycheck.
So that leaves me wondering if my only option will be chemo because at least that's covered because it's administered in the hospital.
Have you checked directly with your Cancer Agency? I have recently found that my local hem/onc has not been up to date on what’s actually available in Canada and BC. I’m trying not to freak out until I see the specialist at the Cancer Agency. Good luck with this.
I’ve found that for most drugs you can also google the drug name and find an “official” site. Most here come up with US based sites, but the person I have spoken with has come up with who to speak with in other countries, even from California to India. Being in Canada, you should be able to get a toll free number.
Hi Kshinester, we live in Ontario and my husband has been on Ibrutinib for two months now. My husband is 59, unmutated (TP53) and thank goodness Ibrutinib was covered through is work drug plan (Manulife) which covers 95% of drug costs (to a max of $100,000 per year) and with a maximum of $2000 out of pocket per year. We also did an application to the Ontario Trillium program and were approved for $2000 shortfall for the out of pocket expense.
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Six weeks of Ibutinib no improvement?
Starting Acalabrutinib from today.
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Unmutated CLL and MRD-
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