CURE® Magazine names 2018 CLL Heroes

CLL Heroes are nominated by patients and caregivers for their heroic contributions in the field of chronic lymphocytic leukemia or in the lives of people with CLL.

CLLPAG is proud to honour the first CLL heroes – Dr. John Byrd (a renowned CLL specialist and researcher from Ohio State University Comprehensive Cancer Center), patient advocate Christopher Dwyer, Dr. Brian Koffman (patient and founder of CLL Society) and patient advocate Lisa Minkove (patient who supported other female patients through a Facebook group).

In particular we would like to highlight Christopher Dwyer. The CLLPAG Board knows Christopher Dwyer as a founding member, who then became a Honourary Ex-Officio Board member after 10 years of service to the Board. As a Director on the CLLPAG Board, Chris guided us through new research, helped us set up a website, assisted us with patient drug submissions and generally contributed to growth of CLLPAG. He continues to keep Board members up to date with the latest research about CLL. He was instrumental in launching a patient-focused international 3-day conference in 2007, which brings in leading experts from Canada, the US and other parts of the world. This successful conference continues as CLL Live to this day, with Chris playing an important role in identifying faculty.

Many of you know Christopher Dwyer as an internet friend. Chris is a rock in the CLL community, well respected and valued for his knowledge and dedication to helping others. He founded the CLL Canada website, spending a lot of personal time ensuring the site had up-to-date information and resources to support patients with CLL up until 2016 when health issues interfered with his ability to keep it up. He founded the Face Book page ‘Bad to the Bone’ for other CLL patients. On top of this, Chris is a participant on the American Cancer On-line Resource (ACOR) – CLL list serve and Health Unlocked and willing to wade into controversial discussions amongst patients about care and be the voice of reason, pulling everyone back to what the science tells us to ensure decisions are based on credible sources. Despite his own health challenges of late, Chris continues in his efforts to learn as much as he can about latest research advances and communicate this information back to patients and patient organisations to ensure people have access to credible, validated information.

He is so knowledgeable, he often highlights new healthcare professionals in the field we should watch, as they will be a CLL star, and he is always right. He has been and continues to be an inspiration, for his unselfish, kind heart that only wants ‘more’ for those with CLL – more good information, more support, more treatments and more good years of life – and has generously spent much time ensuring that happens.

One of the nominators, Tess Bernacki read these words at the awards ceremony in December 2018, where Chris’ daughter Tara accepted his award “With his extensive knowledge, optimism & encouragement, Chris has given me the support I need to live my life fully. Christopher deserves to be recognized for his tireless efforts to help so many CLL’ers survive and thrive. I personally owe so much to Chris, a man I have never met personally… he has helped me to better understand the disease and to cope with the fear of the unknown these past 10 years living with CLL.

I am grateful to God for the support and knowledge that Chris has given me on this journey and I know that there are so many others who feel the same.

Thank you Chris for navigating me through and keeping me “on track” so that I can live my life whole-heartedly. Thank you for giving all of us “hope”.”

Check out this link for more information on the CLL Heroes https://www.curetoday.com/cllheroes/heroes/2018

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

Find the PDF here

Lymphoma Canada has a new webinar, featuring Dr. Versha Banerji, on Advances in Front-line Treatment of CLL.

Click the link to be taken to the registration site to view the video.

Click 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, 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?

See the full CLLPAG statement.

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.

Lymphoid Cancer FamiliesB.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.

View Press Release

New Treatment Perspectives in CLL: Using Disease and Patient Characteristics to Optimize Outcomes

October 2015

A recent Canadian perspective…

Full Paper

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

Making Empowered Decisions

https://www.patientpower.info/events