By Jennifer Ahlstrom | Posted - May 30th, 2016

 

 

 

 

Are You on the New Oral Ninlaro? If So, Please Take This Survey (before June 10) to Help Get it Approved for Your Fellow Canadian Myeloma Friends

Ninlaro, the first oral proteasome inhibitor, was approved in the United States in November of last year. Canada is now looking to approve funding of the drug and the Myeloma Crowd is happy to help our Canadian myeloma friends get access to the new oral therapy. As part of the review process, patient groups such as Myeloma Canada have created surveys to invite your input so that your opinion (patients and caregivers) can be heard. ninlaro Similar surveys have been conducted for other treatments including bortezomib (Velcade®), pomalidomide (Pomalyst®) and lenalidomide (Revlimid®) (for maintenance treatment post-transplant). The substantial responses from past surveys from US patients and caregivers who participated in these surveys provided the valuable input and helped Canadian reviewers grant approval of past drugs. Myeloma Canada is reaching out to US myeloma patients and caregivers to take a few minutes to complete a brief online survey by clicking the link to either the patient survey or the caregiver survey link. Complete the Patient Survey Complete the Caregiver Survey   The survey is about your experience with ixazomib (Ninlaro®). Your help with this important matter is greatly appreciated, as very few Canadian patients  have used this treatment. Although there is no guarantee, your critical feedback may help to improve access to this drug for patients across Canada. Please join us and have your say. The patient and caregiver surveys are both very short and should between 5 - 10 minutes. We ask that you complete the survey by Friday, June 10, 2016. Thank you, Privacy Policy: All survey data are being collected by Myeloma Canada, a nationally registered patient-led group registered with the government agency for this submission. To ensure patient privacy and confidentiality, individual responses will not be identifiable. It is important to note that selected quotations may be used for the final submission to government agencies without reference to patient name or any other identifying information.

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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