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 cllpag.canada@gmail.com.
Blood Cancer/CLL Support Group and Patient Meetings
Halifax – Psychoeducational Support Group for Adults Living Well with Blood Cancers
The last Tuesday of the month at 10:00 AM
Location:
Queen Elizabeth II Health Science Centre – VG Site
1276 South Street Floor 8B Room 138
Halifax
Contact for more information:
Janice Spencer, MSW, RSW Social Work
Phone: (902) 473-4072
Email: janice.spencer@cdha.nshealth.ca
Toronto Patients: Are you interested in a CLL-specific support group? CLL Society is interested in hearing from you https://toronto-cll.questionpro.com
Calgary, Alberta LLSC Blood Cancer Group at Wellspring NW Calgary
Patient Information and Support Sessions.
CLL Support Group of Montreal
Contact – Pascale Rousseau: pascale.rousseau@lls.org
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, CLLPAG 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.
IGHV Testing Now Available in Canada
IGHV testing is now available to patients across Canada. IGHV is a “powerful predictor of duration of response and overall survival with chemoimmunotherapy (CIT). As this test may influence choice of therapy between CIT and novel agents, it is critical that providers understand how mutational status is determined and the limitations of testing.” Crombie & Davids https://doi.org/10.1002/ajh.24808
IGHV or mutational status testing is available to all patients through funding provided by Janssen Pharmaceuticals. Physicians can arrange the testing through their Janssen hematology representative. The testing will be done at the Montreal Jewish General Hospital.
TP53 testing is now available in Quebec through Sainte Justine Children’s Hospital and should be available in other provinces within the year.
CLLPAG Urges Quebec Minister to Approve Venetoclax
Venetoclax (Venclexta) was recently recommended by pCODR for conditional funding by all provinces (except Quebec) – see ebulletin #13 above. In Quebec, which has its own process, the Minister of Health and Social Services decided not to fund Venetocax. CLLPAG has written to Minister Barrette to urge him to reconsider his decision and ensure that all Canadians have equal access to this important medication.
pCODR Recommends Reimbursement of Venetoclax
In a surprise decision, pCODR, the federal agency that recommends whether a drug should be on provincial formularies, has reversed its initial decision and recommended that Venetoclax be reimbursed. This is the first time that pCODR has reversed an initial decision. See the joint CLLPAG/Lymphoma Canada response to the initial decision – click here.
Drug Pricing Reform is a Lose-Lose for Patients
The framing of the debate around the reform of the Patent Medicines Price Review Board (PMPRB) will not benefit patients.
If prices remain at current levels, provinces will continue to slow down approval of new drugs. If prices are lower, as contemplated by the PMPRB reform, drug companies say they will delay introducing new drugs to the Canadian market. In both situations, patients get less access to new drugs that have demonstrated effectiveness.
CLLPAG has called on both parties, drug companies and the PMPRB, to reset the discussion. The way the debate is going, patients are the losers. And if patients are losers, are there any real winners?
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. CLLPAG 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
Shingrix: New Shingles Vaccine
December 2017
CLL patients and other immune-compromised patients have an increased risk of developing shingles. Health Canada recently approved Shingrix, a shingles vaccine for people ages 50 and older with normal immune systems. In trials, the vaccine was effective in preventing shingles in >90% of patients. The vaccine is given in two doses by intramuscular injection. The vaccine’s manufacturer, GlaxoSmith Kline reported on Dec 6, 2017 that new data from a Phase III clinical study supports the safety and efficacy of Shingrix (Zoster Vaccine Recombinant, Adjuvanted) in preventing shingles (herpes zoster) when given to adults 18 years and above shortly after undergoing autologous haematopoietic stem cell transplant (auHSCT).
Click here for more information.
GO-CART
September 2017
WANTED: Patients and family members to help design a clinical study of a new treatment for blood cancers.
Click here for more information.
B.C. Cancer Agency Looking for Volunteers
The Lymphoid Cancer Families study is currently recruiting families with multiple cases of lymphoid cancer (including CLL/SLL, multiple myeloma, Hodgkin and non-Hodgkin lymphoma) to participate in the study. For more information, please contact studycoordinator@bcgsc.ca or 604-675-8172.
Venclexta, (venetoclax) approved by Health Canada for special use
October 5, 2016
This is approved but not funded by the provinces … please talk to your physician.
New Treatment Perspectives in CLL: Using Disease and Patient Characteristics to Optimize Outcomes
October 2015
A recent Canadian perspective…
WEBINARS
These organizations produce webinars on the latest CLL and related cancer issues.