CLL & SLL Patient and Caregiver Survey
If you have chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) or you are a caregiver of a patient with CLL or SLL, you can help by completing our surveys.
Lymphoma Canada and the CLL Patient Advocacy Group (CLLPAG) are preparing a submission for the pan¬Canadian Oncology Drug Review (pCODR) for:
Venetoclax (Venclexta) for the treatment of patients with relapsed/refractory chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).
The surveys provide us with the patient and caregiver input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.
You do not need to live in Canada to complete this survey. You do not need to have received treatment with venetoclax (Venclexta).
BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS TREATMENT IN CANADA.
The survey will be open until midnight Pacific Time on Thursday, June 15th and should only take 10 minutes of your time.
You may access the survey by clicking the link below.
Survey for Patients
Survey for Caregivers
Please share and help us spread the word.
Thank you for your support.
Contact Deborah Contact Email if you have any questions or difficulty completing the survey.
Deborah Baker Past Chair
May 29, 2017
Allard Lecture Series
Wellspring Edmonton is pleased to present the Allard Lecture Series with Dr. Simon Sutcliffe, President, Two Worlds Cancer Collaboration Foundation, former CEO, BC Cancer Agency and Princess Margaret Hospital, Past Chair, Canadian Partnership Against Cancer.
Dr. Sutcliffe will be delivering a lecture on The science and art of healing: new horizons versus new eyes that will explore our preparedness and readiness to act upon evidence that could lead to improved health outcomes in cancer.
Registration Information to follow...
April 25, 2017
Welcome to our newest CLLPAG Board of DirectorsJudy Watt-Watson - Ontario and Kathy Green - Nova Scotia
CLLPAG still has openings on the Board of Directors for a representative from BC, Quebec, Saskatchewan or Manitoba. Patients, caregivers and interested persons are welcome to apply.
For more information and an application form contact Deborah: Contact Email
CLLPAG is a volunteer-run patient organization made up of Canadian CLL patients in various stages of treatment as well as persons interested in advocating for CLL and SLL patients. The CLLPAG Board advocates for and provides education about health care that will extend the lives of Canadians affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL).
Directors are expected to participate in 4-5 conference call meetings and one face-to-face meeting per year.
It’s an opportunity to make a difference for CLL patients in Canada.
March 05, 2017
CLLPAG has new logos
Thank you to Janssen Pharmaceutical Company Canada for their support for this project.
March 6th, 2017
A Nice Story: Why a Cancer Survivor's Wife Designed a Low-Cost Prosthetic Bra and Gives It out for FreeIt was April 2011, when Arun, a 41 year old chartered accountant, caught some infection and fever, the doctor asked him to do a routine blood test. During the check-up, Arun was diagnosed with Chronic lymphocytic leukemia (CLL), a type of cancer of the blood and bone marrow. The term “chronic” in chronic lymphocytic leukemia comes from the fact that it typically progresses more slowly than other types of leukemia.
“The doctors assured us that Arun doesn’t need any treatment right now as this was a very slow-growing cancer and there was not much we could do about it at this stage. We still went to every possible hospital in Faridabad and Delhi. We took second opinions from Tata memorial hospital, Mumbai and even from the U.S. But every doctor gave us the same opinion,” says Kavita.
Arun was kept under observation and had to go for routine blood tests and ultra sounds. The couple knew that there would be a time when these cancer cells would bother Arun’s body, but were assured that the time was far.
In October 2015, Arun was told to start with chemotherapy. But right after the first chemo, Arun went through the Richter’s transformation.
Full Story Link
March 6th, 2017
We’re excited to announce the launch of My CLL Compass, a new online tool that helps Canadian patients and caregivers get the information they need and help alleviate anxiety or confusion they may be feeling after a chronic lymphocytic leukemia (CLL) diagnosis.
The educational website provides information and tips on living with CLL (including “Watch and Wait”), resources for patients and caregivers, questions to ask a doctor, and more. Through an interactive quiz with printable results, patients can learn more about the unique factors they should consider when choosing the options that are right for them, such as other medical conditions, personal health goals and lifestyle factors.
My CLL Compass aims to empower people living with CLL have informed discussions with their doctor along their journey with the disease. The website, made possible by financial support from Hoffmann-La Roche Limited (Roche Canada), was developed in collaboration with an expert steering committee of healthcare professionals, patients and key patient organizations, including CLL Patient Advocacy Group (CLLPAG), The Leukemia and Lymphoma Society of Canada (LLSC), and Lymphoma Canada.
Rebecca Drotos, CLLPAG Board Director has provided media input for My CLL Compass and you can find her interviews at these links:
Niagara This Week
Visit My CLL Compass and take the quiz today: http://www.mycllcompass.ca
June 29, 2016
'Reimagining the Hospital Experience of Cancer' Contest.Impressions of the Jury Meeting
217 ideas worldwide have been submitted for the 'Reimagining the Hospital Experience of Cancer' contest. An independent jury panel consisting of professionals and patient advocates had the difficult task to select the TOP 3 ideas that may effectively improve the hospital experience of patients with cancer, such as CLL.
The jury was very enthusiastic about the ideas, which led to an interesting meeting and long discussions. The final winners announcement will be soon. Thanks to the CLLPAG members who participated in this contest.
June 29, 2016
Pan-Canadian Oncology Drug Review (pCODR) Update Spring 2017 ￼CLL PAG continues to prepare patient submissions for pCODR, the pan-Canadian Oncology Drug Review. The pan-Canadian Oncology Drug Review (pCODR) is an evidence-based, cancer drug review process. The pCODR process is designed to bring consistency and clarity to the assessment of cancer drugs by reviewing clinical evidence, cost-effectiveness, and patient perspectives, and using this information to make recommendations to Canada's provinces and territories (except Quebec) in guiding their drug funding decisions. For more information, go to https://www.cadth.ca/pcodr
As of this time, we have provided patient input for:
1. Venetoclax (Venclexta) – CLLPAG patient submission made July 22, 2016. The manufacturer withdrew their application on December 15, 2016, as the initial recommendation did not recommend funding. Link Here
2. Ibrutinib (Imbruvica) for first-line treatment of Chronic Lymphocytic Leukemia. Patient response submitted May 4, 2016: As of January 5, 2017 the provinces (except Quebec) and the territories are in negotiation with the manufacturer regarding cost PDF LINK Quebec (INESSS) has decided not to fund Imbruvica for first line treatment.Link Here
3. Treanda (Bendamustine) for First-line Treatment of Chronic Lymphocytic Leukemia And Relapse Chronic Lymphocytic Leukemia - Status: Relapsed CLL - December 14, 2012, Notification to implement. Funded in B.C., AB. Not funded in other provinces. Link Here First-line CLL – March 6, 2013, Notification to implement. Funded in AB, SK, MB, ON, NS, NB, NL. Under provincial consideration in BC, PEI,. Link Here
4. Arzerra (Ofatumumab) in combination with chlorambucil, for treatment of patients with Chronic Lymphocytic Leukemia who have not received prior therapy and are inappropriate for fludarabine based therapy - Status: February 23, 2015, Notification to implement, funding not recommended. Under provincial consideration in AB, NB, NL. Not funded in other provinces. Link Here
5. Treanda (Bendamustine) for the first-line treatment of patients with chronic lymphocytic leukemia (CLL) in combination with rituximab (Rituxan) - July 2014. Status: The manufacturer has voluntarily withdrawn their submission from pCODR. Link Here
The following submissions have been done jointly with The Leukemia and Lymphoma Society of Canada:
1. Gazyva (Obinutuzumab) (in combination with chlorambucil for previously untreated chronic lymphocytic leukemia where fludarabine-based therapy is considered inappropriate. Status: February 11, 2015, Notification to Implement Issued. Funded in AB, SK, MB, ON, NS, under consideration in other provinces. Link Here
2. Imbruvica (Ibrutinib) for the treatment of patients with CLL/SLL (small lymphocytic leukemia) with or without del 17p who have received at least one prior therapy and are not considered appropriate for treatment or re-treatment with a purine analog. Status: March 20, 2015, Notification to implement issued. Funded in all provinces except PEI where it is under consideration. Link Here
3. Zydelig (Idelalisib) in combination with rituximab for the treatment of patients with relapsed chronic lymphocytic leukemia (CLL). Status: September 2, 2015, Notification to implement issued. Funding under negotiation with manufacturer in all provinces. Link Here
Thank you to those who participated in the CLL PAG surveys; your responses have been and will continue to be used in upcoming submissions.
Contact Deborah if you would like more information. Contact Email
April 4, 2016, Updated March, 2017
YOU&iTM Support Program FOR IMBRUVICA￼Janssen Inc. has created the YOU&i(TM) Support Program to provide personalized services to patients and physicians to facilitate treatment with IMBRUVICA®. This program will continue to be available once provincial funding is in place. The program offers patients customized support, advice, education and encouragement from Oncology Nurse Coaches, and navigation of drug reimbursement options. This specialized patient support program is offered at no cost to the patient and is fully confidential. For more information please call 1-844-888-0080(Monday-Friday 8am-8pm EST) or visit Janssen You & I . You&i
Rising drug costs are Forcing Changes in Private Drug PlansInnovative Medicines, the industry association of the pharmaceutical industry, recently held a seminar for patient groups about changes in private drug plans.
The pharmaceutical industry representatives reported that new high-priced specialty drugs are creating a budget crunch for the private group insurance drug plans (Green Shield, Great West Life and Manulife and other insurers). CLL patients are familiar with Ibrutinib, which has recently been approved in most provinces and can cost over $100,000 a year to patients without drug coverage. To manage the new costs, insurers are setting up new drug plan models. Here are four examples:
1. Manulife’s Drug Watch – Manulife has set up special program to scrutinize its drug coverage. Under DrugWatch, an additional ‘financial assessment’ determines if a drug will be covered or not. A drug could be covered but with significant price increases in the cost of the drug plan for employers and employees. In addition, coverage could be conditional on patient participation in a drug adherence program to make sure patients take their medication and are responding to the medication.
2. Prior Authorization – With prior authorization,additional patient information must be provided to the insurer before drug coverage is approved.
3. Case management - As in disability claims,a case manager will review the proposed treatment, consider alternatives and evaluate results. Patient cooperation is a key criterion in continued coverage.
4. Maximum limits – The insurer sets a claims limit for certain classes of drugs. Until now, the cost pressures have been from specialty drugs for small groups of patients but many new high cost drugs for larger patient groups are coming to market in the near future. Innovative Medicines hopes that employers and employees will see the value of continuing well-funded and comprehensive private drug plans.
Publically funded drug plans are undoubtedly facing the same cost pressures, although the private plans seem to be leading the changes.
To ensure that your health needs are met, it is best to check with your employer or trade union to make sure they are aware of your drug needs. Ask to be made aware of any discussions about changes in drug coverage.
FORwaRds – Academics from around the world meet to discuss Fear of Cancer RecurrenceA key feature of CLL is that it reoccurs and the timing can be unpredictable. We go to our regular blood tests wondering if the results will show that the cancer is returning. Living with that fear is part of living with CLL. A group of academics from around the world met in Ottawa to this past summer to discuss the fear of cancer recurrence (FCR). Their broad aim is to raise awareness of FCR and promote activities, which improve the identification and treatment of high levels of FCR amongst cancer patients. They formed an ongoing group called Fear of Recurrence Special Interest Group (FORwaRdS). FORwaRds is a multidisciplinary group of clinicians, researchers and patient representatives with a special interest in fear of cancer recurrence (FCR).
They are stimulating and disseminating research, creating opportunities for education and networking on FCR. Peter Dorfman, Vice-Chair of CLLPAG was one of two patients chosen to participate in the Ottawa meeting to share what it is like to live with a cancer that always comes back.
Equal and Fair Cancer Treatment for All Canadians￼
Ontario’s Two-Tiered Cancer System is a Problem That Requires Immediate Treatment
CanCertainty Coalition Calls for an Integrated Cancer System that Equally Supports Patients Whether Treated in Hospital or at Home
Six Steps to Take Action for CanCertainty
Ready to take action for CanCertainty? Here are six steps that you and your family can take that can really make a difference:
Step 1: Follow us online.
Step 2: Share on social media.
Step 3: Write an email or letter.
Step 4: Call or meet with your local provincial representative.
Step 5: Share your story.
Step 6: Make a donation to the campaign.
Someone in my family has cancer: A video for kids and parents
A diagnosis of cancer is devastating, not only for the patient, but also for his or her entire family. Lundbeck Canada has developed an animated video aimed at helping children better understand cancer in the family and help them cope with the situation. This video is meant as a conversation starter and should not replace an open conversation between a child and an adult. Watch it with your children or grandchildren.
Here are some organizations that might be useful in helping you to answer any tough questions that might come up:
Canadian Cancer Society — Telling children about a cancer diagnosis in the family
American Cancer Society — Helping children when a family member has cancer: Dealing with diagnosis
Cancer Research UK: Talking to children
NYU Langone Medical Center: Straight talk to kids
Fondation québécoise du cancer: Du soutien au quotidien pour les Québécois atteints de cancer et leurs proches
Video on YouTube: