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Ed Forum 2017

Help WMers in Canada get access to Imbruvica (ibrutinib)

Apr 9, 2016

Lymphoma Canada is working to help Canadians gain access to Imbruvica as a treatment for WM. They want to collect data from international patients to present to the government to assist in gaining approval, and they need our help!

Please complete the Waldenstrom’s Macroglobulinemia (Lymphoplasmacytic Lymphoma) Patient and Caregiver Surveys by Wednesday, April 27th (see links at bottom).

There are preliminary indications that Imbruvica may be approved soon by Health Canada, but formal press releases on the part of Health Canada and/or Janssen have not yet been issued. However, even with that approval, the process does not end there, and actual reimbursed use is not yet possible. The next step is that the regulatory bodies review the data: scientific studies, patient organizations’ submissions (such as via Lymphoma Canada surveys), and the pharma-economics. Two distinct bodies – the pan-Canadian Oncology Drug Review (pCODR) for all provinces with the exception of Quebec, and INESSS in Quebec – then rule on whether or not they recommend that the drug in question should be reimbursed.

In fact, in Canada, all new cancer drugs must be reviewed by the pCODR before funding recommendations are issued to the provinces. Patient advocacy group input is collected by pCODR and becomes an important input to a drug review. The information is put into the pCODR Clinical Guidance Reports for review by an Expert Review Committee who then decide whether or not to recommend funding the drug under review.

So, in Canada, patient and caregiver perspectives can be crucially important. Lymphoma Canada is looking both in Canada and internationally to help find patients and caregivers who may be able to provide some relevant and much needed perspectives.

If you have WM (treated or untreated) or you are a caregiver of a patient with WM, you can help get patients access to ibrutinib by completing one of the surveys below. The surveys will provide Lymphoma Canada with the patient and caregiver input required for their submission, which will help them make recommendations to the provinces and territories regarding funding for new cancer drugs. Note: you do NOT need to live in Canada to complete the survey.


The surveys will be open until midnight Pacific Time on Wednesday, April 27th, and should take only ten minutes of your time.

You may access the surveys by clicking the appropriate link below:

For more information about the surveys see also: Lymphoma Canada WM/LPL Survey website.

All responses are confidential and not connected to you unless you authorize it.