CLL patients with idelalisib (Zydelig) experience

Lymphoma Canada is conducting a survey of CLL patients to appeal to Canadian governments to provide funding for idelalisib (Zydelig) in Canada. Idelalisib (Zydelig) has been approved by the FDA and the European Medicines Agency but Canadians are also trying to gain access to this treatment.

We are looking for CLL patients in Canada and internationally with an idelalisib (Zydelig) experience to complete a 10-minute survey to provide us with the patient input required for the submission.

Be part of the process by sharing the survey with CLL patients and/or completing the survey by midnight Pacific Time on Tuesday, April 7, 2015.

Please share this link and help us spread the word. We need as many CLL patients with an idelalisib (Zydelig) experience to take this online survey. lymphoma.ca/news/idelalisib...

Thank you for your support.

Lymphoma Canada

5 Replies

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  • No doubt members will be wondering at the appearance of this post requesting us to complete a survey, given this community's admins are quick to deal with such requests, removing any that have not been approved by the CLL Support Association. The above post was indeed approved by the new Chair of the CLL Support Association, following a polite request by Lymphoma Cananda. (LCAdmin is the administrator of the Lymphoma Canada HU community, which started on HU not long after our community.)

    CLL patients and their carers in Canada are supported by both Lymphoma Canada and the CLL Patient Advocacy Group (CLLPAG). CLL is one of the blood cancers that falls within Lymphoma Canada's remit, whereas CLLPAG is specifically focused on CLL/SLL. Idelalisib (Zydelig) also has a wider relevance to B-cell lymphomas beyond CLL, with its use approved by the FDA for Follicular B-cell non-Hodgkin lymphoma.

    CLLPAG will be releasing their own survey to likewise support their submission seeking funding for idelalisib (Zydelig) to the Canadian governments. It will be available for members to complete next week. (I suspect that finalising arrangements for the Niagara Falls conference early next month just might be be a competing priority right now :) ).

    So, anyone with idelalisib (Zydelig) experience, please ensure that you support CLL patients in Canada by completing these surveys. We all know that with CLL, the more options for treatment, the better.

    Neil

  • Thanks Neil... Canadians do need more treatment options

  • I hope my survey helps. About 20 questions.

    Jeff

  • It is great news for UK patients that Idelalisib has been aproved by SMC for NHS Scotland use to treat CLL, and is available through CDF and early access schemes and other means for those in England, Wales & Northern Ireland, the CLL patient group voice and experiences of individuals have contributed towards this. there is still some way to go in the UK for access through all NHS

    Yes, please support the Canadian patient group surveys if you have experience with idelalisib this is the link to the ten minute survey: lymphoma.ca/news/idelalisib...

    Not a lot of people in Canada have had experience with Idelalisib,

    Lymphoma Canada are seeking input from patients internationally to complete their survey to support their government submission. Patients who have already completed other surveys are still welcome (and needed), as this survey will inform a separate submission and each one is treated uniquely. The more patient advocacy groups that represent the CLL patient group the stronger the voice will be.

    CLL Support Association Trustees.

  • I hope that having completed the Survey - it will help other CLL sufferers wherever they are in this world - my monthly post in 2013 (B+R ...I) are freely on this site.

    May your god be with you

    Marty

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