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Get Involved in CLLPAG

CLLPAG has openings on the Board of Directors for a representative from BC, Quebec and the Maritime provinces. 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 that 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.

June 29, 2016

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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.

people 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

and

Huffington Post


Visit My CLL Compass and take the quiz today: http://www.mycllcompass.ca

June 29, 2016

Thank You

To all who completed our recent patient and caregiver surveys. Your completion of the surveys helped us advocate for access to ibrutinib (Imbruvica) first-line and Venetoclax for relapsed and refractory CLL patients in Canada. We have shared the data with patient advocacy groups in the UK and Czechoslovakia.

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June 29, 2016

'Reimagining the Hospital Experience of Cancer' Contest.

Impressions of the Jury Meeting

people 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 2016 

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. Ibrutinib (Imbruvica) for first-line treatment of Chronic Lymphocytic Leukemia. Patient response submitted May 4, 2016: No information yet.

2. 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

3.  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

4. 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 June 29, 2016


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


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Rising drug costs are Forcing Changes in Private Drug Plans

Innovative 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 Recurrence

A 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.


Report from Canadian CLL Meeting, October 1-2, 2015



Each year, Canadian CLL Researchers meet in Winnipeg to share their work and learn about recent developments in CLL research. As part of the program, CLLPAG has been invited to share its work and provide a patient perspective.

Here is a snapshot of some of the presentations.

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  1. ‣ CLL patients need to be aware of secondary cancers, particularly skin cancers. In a Manitoba study, 22% of CLL patients developed skin cancer, mostly basal cell.

  2. ‣ An emerging new treatment uses a patient’s blood to fight cancer. Called immunotherapy, a sample of the patient’s white blood cells is extracted, re-engineered and then injected back into the patient to treat their blood cancer. The re-engineered cells are called chimeric antigen receptor T-cells, or CARTs. Recent advances may soon allow a patient’s cells to the re-engineered with within three days.

  3. ‣ The success of Ibrutinib as a BTK pathway inhibitor has spurred new studies on the complex ways that novel agents affect the cell microenvironment. Scientists are also looking at other potential cell pathways for CLL therapies.

  4. ‣ While data on Ibrutinib continues to be very positive, patients who stop taking Ibrutinib do very poorly.

  5. ‣ The challenge of treating patients with high risk markers such as 17p and 11q was a theme in many presentations.

  6. ‣ The use of mitochondrial inhibitors and uncouplers may allow patients to reduce their dosage of Bendamustine, Fludarabine and Chlorambucil without reducing the drug’s effectiveness. Scientists are working on an automated cell level screening mechanism to identify the best treatment for individual patients. CLL health care providers and scientists have made Winnipeg a centre of excellence in CLL by leveraging the power of their provincial CLL patient database. An easily accessible database facilitates research, easy identification of patient profiles and best therapeutic responses.


Meeting website Link Here

Submitted by Peter Dorfman
January 23, 2016

Conference 2015




Flyer    Agenda    Participant Bios


Conference 2015 Overview



Conference Speaker Videos on YouTube



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:

Lundbeck Canada



Patient Power

CLL Patient Advocacy Group is pleased to partner with Patient Power to bring you audio and video interviews about CLL to help you make informed decisions in partnership with your medical team. These are patient-centric programs focus on delivering the most credible, authoritative and up-to-date health information. Founded by patient-advocate, medical journalist, author and cancer survivor Andrew Schorr, Patient Power goes far beyond basic health information. View the entire library of audio and video interviews on cancer and chronic illness at Patient Power. http://www.patientpower.info/chronic-lymphocytic-leukemia







Just search this website


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CLLPAG Member


Click the button link below and include your full name and province/state in the email.



Join CLLPAG



Zydelig (idelalisib) ... Health Canada Advisory 🇨🇦

Health Canada is advising patients to speak with their doctor if they have questions or concerns about Zydelig. Health-care professionals and patients should report adverse side effects

More here: Health Canada

March 22, 2016

Canadian Clinical Trials Education Website Launched

Network of Networks website It Starts With Me was developed to provide the basics on clinical trials for the public (in English and French). The website's development was supported in part by a CIHR SPOR Patient Engagement Collaboration Grant, which facilitated the work with patients and caregivers.

Link to It Starts With Me Website: Link Here

Jan 16, 2016

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


A recent Canadian perspective... 🇨🇦

Full Paper New Evidence

Oct 10, 2015

Idelalisib (Zydelig) gets pCODR final recommendation for Canada


Today, the pCODR Expert Review Committee (pERC) issued the final recommendation for idelalisib (Zydelig) for chronic lymphocytic leukemia (CLL). pERC recommends funding idelalisib (Zydelig), conditional on cost-effectiveness being improved to an acceptable level, when used in combination with rituximab for the treatment of patients with relapsed chronic lymphocytic leukemia (CLL). Treatment should continue until unacceptable toxicity or disease progression.

Final Recommendation text

Aug 18, 2015


CLL Resources PDF


A list of current resources for CLL patients. This list was compiled for the CLL Live 2015 Conference. Please download to your computer

CLL Patient Internet Resources

CLL Acronyms
June 13, 2015

Quebec funds Gazyva


People in Quebec living with Chronic Lymphocytic Leukemia (CLL) will now be able to access a new treatment option through the province's prescription drug insurance plan.

Just yesterday, GAZYVA® (obinutuzumab) in combination with chlorambucil chemotherapy was added to Quebec's Hospital Formulary. GAZYVA® was approved by Health Canada on November 25, 2014, in combination with chlorambucil, for the treatment of patients with previously untreated CLL.

Other provinces are currently reviewing funding.
Press Release

June 2, 2015

CLL Live 2015 Speaker Videos



YouTube Playlist Link Here

Conference 2015 Overview

May 16, 2015

pCODR ... Imbruvica (ibrutinib) and Gazyva (obinutuzimab) initial recommendations positive

This is crossing a second hurdle...

It does not mean it is provincially funded anywhere or in any clinic yet...please bear this in mind. This recommendation is not binding on provinces, territories or federally funded plans.

Quebec does their own approval process...so they are not involved in these recommendations.

Imbruvica (ibrutinib) Recommendation, second line with or without 17p/TP53

LINK TO REPORT

Gazyza Recommendation... with chlorambucil first line

LINK TO REPORT

Jan 9, 2015

pCODR... Ofatumumab/chlorambucil

The pCODR review committee pERC, has issued a draft recommendation that ofatumumab (Arzerra) and chlorambucil NOT be recommended for funding for Canadian CLL patients unsuitable for fludarabine.

There is an appeal process and the final recommendation will be made at a later date.


Decision PDF
Dec 4, 2014

Gazyva ... Health Canada Approved

Roche Canada announced that Health Canada has approved GAZYVA™ (obinutuzumab) to be administered in combination with chlorambucil chemotherapy for the treatment of people with previously untreated CLL.

This is approval for safety and efficacy. It is not available or funded in the clinic yet.


Link Here
Nov 24, 2014

New Links

Canadian Clinical Trials

Link To CLL Trials Listing

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2010 Cancer Drugs in B.C.

Link Here PDF

2010 Cancer Care Ontario
Drug Formulary

Link Here

Bc_familystudy


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