CLL Canada Advocacy for the Funding of Venetoclax and Acalabrutinib Treatments for CLL

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 Comments on CADTH Drug Evaluation Process

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

Review Article on the Treatment of Chronic Lymphocytic Leukemia

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.

www.nejm.org

Updates from the American Society of Hematology 2019 annual meeting: practice-changing studies in treatment-naïve chronic lymphocytic leukemia

www.current-oncology.com/

Canadian evidence-based guidelines for first-line treatment of chronic lymphocytic leukemia have been published in Current Oncology.

Find the PDF here

International Workshop on CLL (iWCLL) has published new guidelines.

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

Quality of Life Survey Shows the Challenges of Patients and Caregivers

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.

Annual Canadian CLL Research Meeting

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

Ontario Auditor General: Cancer Patients in Ontario Face Delays and Safety Issues Related to Take-Home Cancer Treatments

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

Events

If you know of an educational event that would be of interest to someone affected by CLL, please let us know by email at cllcanada.org@gmail.com.

CLL Conference Toronto

Date: November 16 2019

Event Information:
Watch the presentations from a free half-day educational conference for CLL patients, survivors, and caregivers .

Learn about CLL Research Advances, CLL Symptoms and Treatment Management, followed by a patient-survivor panel to hear from those living well with CLL.

Blood Cancer/CLL Support Group and Patient Meetings

Toronto CLL Support Group

Contact – Gerg Speirs:  gregrspeirs@gmail.com

Montreal CLL Support Group

Contact – Jolyane Pelletier:  Jolyane.Pelletier@lls.org

CLL Information & Support

CLL Information & Support Facebook Group moderated by the Leukemia & Lymphoma Society of Canada
https://www.facebook.com/groups/CLLSupportLLSC

  • E-Bulletin 20 – Special edition Federal Regulations Threaten the Availability of New Innovative Drugs for Canadian Patients
  • E-Bulletin 19 – CLLPAG Advocacy for CLL Treatments, Venetoclax funded in all provinces except PEI, Interview with Dr. Jennifer Woyach on BTK Inhibitors, National Leukemia Conference November 16 – 20, 2020, COVID 19 – CLL patients at risk
  • E-Bulletin 18 – CLL/SLL Patient Survey, Quebec first province to reimburse the combination Venetoclax + Rituximab, Changes to the CLL Canada Board of Directors
  • E-Bulletin 17
  • E-Bulletin 16
  • E-Bulletin 15
  • E-Bulletin 14