January 16, 2024 update
People with CLL are at greater risk of severe consequences of COVID-19 and less protected by vaccination because CLL reduces the effectiveness of their immune system. This document outlines the treatments that are available for COVID-19 to people with CLL and how to get access to them in each province.
In the fall of 2020 CLL Canada surveyed its members in order to better understand their needs and interests. Here are the results of the survey.
In April 2020, CLL Canada made submissions to the agencies responsible for making recommendations to provincial governments regarding the funding of medical treatments. CADTH is the agency for all Canadian provinces except Quebec, which has its own agency INESSS.
CLL Canada, in collaboration with Lymphoma Canada, submitted patient input to the review of two CLL treatments: (1) Venetoclax and obinutuzumab (Gazyva) for first-line treatment of CLL/SLL and (2) Acalabrutinib (Calquence) for first-line and relapsed treatment of CLL/SLL. We surveyed CLL patients in Canada and around the world that had experienced these treatments and used this data to demonstrate that these treatments had few side effects and permitted patients to regain a good quality of life, in addition to their beneficial health effects. These briefs were also submitted to INESSS in Quebec.
CLL Canada commented on changes being proposed by CADTH to the process by which recommendations are made to provincial governments regarding the funding of drugs. While we supported many of the proposed changes, we stressed the importance of leaving sufficient time for patient groups to gather the view of patients, the importance of considering patient’s experience on the sequencing of treatments and the significance of reduced side effects as a justification for a positive funding recommendation
This comprehensive overview of the treatment of CLL was published in the New England Journal of Medicine on July 30, 2020. The article is free, but registration is required.
This is an important document for all CLL patients. You can access it here: 2018 CLL Guidelines.
http://www.bloodjournal.org/content/bloodjournal/131/25/2745.full.pdf?sso-checked=true
In 2017, CLL Canada and Lymphoma Canada surveyed 320 CLL patients and caregivers about how CLL affects their quality of life. CLLPAG has published a infographic of the findings. Among the findings: 36% of patients have waves of fatigue and 80% of caregivers experience anxiety and worry. Click here to see the infographic.
January 2019
Each year, Canadian and International Scientists and clinicians get together in Winnipeg, Manitoba to discuss the latest CLL/SLL research as it applies in Canada. CLL Canada has been invited to send a Board member to this meeting since 2009 to report on our activities and report back to members. Board member Kathy Green attended the 2018 meeting and her report is at the following link: 14th Canadian CLL Research Meeting Report
December 2017
In its Annual Report released today, the Auditor General of Ontario found cancer patients who need take-home cancer treatments are facing administrative delays in starting treatments and safety issues.
Specifically, the Value-for-Money Audit of Cancer Treatment Services found patients are getting inadequate support for the proper and safe use of take-home drugs. When patients don’t have sufficient safety information and there is a lack of pharmacist experience dispensing cancer drugs, it can lead to dispensing errors, a lack of toxicity management or safe handling, inaccurate advice and insufficient information or follow-up regarding side-effects.
For more information:
http://www.cancertaintyforall.ca/ontario
Auditor General Report Finds Cancer Patients in Ontario Face Delays and Safety Issues
