Myeloma Matters: May 2018

The Canadian Cancer Trials Group Presents

Co-founder and Chairman of Myeloma Canada with an Award of Appreciation

The Canadian Cancer Trial Group (CCTG) is a cooperative oncology group that designs, administers, and offers clinical trials in cancer therapy, supportive care and prevention across Canada. They support a collaborative network of internationally renowned researchers, physicians, scientists, and statisticians who are looking to find the treatments that allow cancer patients to live longer and better lives.

On April 28, 2018, at the Annual CCTG Spring Meeting, Myeloma Canada’s Co-founder and Chairman, Aldo Del Col, was presented with an Award of Appreciation for his important contributions in ensuring the patient voice is heard by taking part in clinical trial design and decision-making.

Aldo was also instrumental in the creation of a Lay Representative Advisory Committee, which provides input to the various cancer research groups under the CCTG so that the patient voice is heard when cancer trials are being designed and protocols are being developed. Their role is to present the perspective of patients, their families, and the public at large, in the development and delivery of clinical trials.

We would like to congratulate Aldo for his dedication and persistence in putting patients first and for helping to shape the Canadian treatment landscape to improve patient outcomes.

The Nomination Period for the Marion State Memorial Myeloma Canada Nursing Award

is Now Open!

The Marion State Memorial Myeloma Canada Nursing Award recognizes Canadian nurses who demonstrate excellence in nursing care through leadership, teamwork, passion and commitment to advancing the care of myeloma patients.

Vote for your favourite nurse now!

Find out more

Less Than Two Months Left

to Plant Your Own Myeloma Garden

Take part in our 10 ^th Anniversary Multiple Myeloma March Full Bloom campaign by planting our Gerber Daisy seeds to create your very own myeloma garden.

How to participate :

As always, registration is free of charge. However, until July 1 ^st , 2018, when you register and make a minimum donation of $50 to the Multiple Myeloma March, Myeloma Canada will mail you a sachet of colourful Gerber Daisy seeds as a symbol of our growing community you have helped to cultivate. A wonderful activity to participate in with your friends and family!

Find our more details here .

Spotlight on Andrea Zwarich:

My Experience with

Receiving an Allogeneic Stem Cell Transplant

‌

“My new norm is so weird and if it sounds unbelievable, it is true. Trust me, I have learned to believe in the unbelievable, to hope, when all hope is shattered and to love, when all love is absent.”

Read full article

Updates in Canadian Myeloma Research

The Myeloma Canada Research Network Kicks-off the First Canadian Consensus Guideline Consortium

Friday, April 27, marked the inaugural meeting of the Myeloma Canada Research Network (MCRN) Consensus Guideline Consortium Meeting.

Initiated and led by Myeloma Canada, this project is a giant leap forward for the myeloma community and for the treatment Canadian patients. In essence, Canadian researchers and hematologists from coast-to-coast for a meeting of the minds to develop and eventually publish the first-ever standardized guidelines for multiple myeloma diagnosis in Canada.

As Canadians, we would sincerely like to thank the Myeloma Canada Research Network for supporting this initiative, as well the authors and members of this consortium for building a path and leading the way for others to accelerate access to better care for multiple myeloma patients. The authors are: Dr Debra Bergstrom (St John's), Dr Julie Cote (Quebec), Dr Rami Kotb (Winnipeg), Dr Martha Louzada (London), Dr Michael Sebag (Montreal), Dr Heather Sutherland (Vancouver), Dr Sophia Tavoularis (Patient Representative, MCRN Board of Directors, Ottawa) and Dr Chris Venner (Edmonton).

Negotiations for Daratumumab is Currently Underway with the panCanadian Pharmaceutical Alliance

As of April 2018, daratumumab (Dazalex) has entered one of the last review stages and approval process before it can be made available and covered by public drug plans. It is at the stage where the drug price is being negotiated between the panCanadian Pharmaceutical Alliance (pCPA), on behalf of the provinces, and the drug manufacturer. Currently, this stage of the review process is non-transparent and is not made available to the public.

Typically, negotiations can take anywhere from 9 to 12 months to be completed and just like other myeloma drugs currently in this stage, Myeloma Canada is keeping a close eye on progress and will report any updates to our community.

Canadian Agency for Drugs and Technologies in Health (CADTH) to Review CAR T-Cell Therapies in Canada

Significant advancements in cancer research are getting closer to being available to Canadian patients and this is very exciting news. In recent international scientific conferences, it was demonstrated that the gene therapy known as c himeric a ntigen r eceptor (CAR) T-cell therapy (referred to as ‘CAR-T’), is promising for myeloma patients who have been heavily pretreated and have become refractory to multiple lines of therapy. Currently, CAR T-cell therapy has been approved by the FDA for leukemia and lymphoma, and several trials are underway in various countries, including Canada.

The Canadian Agency for Drugs and Technologies in Health (CADTH), is responsible for providing Canadian provinces with an objective review of evidence relating to drugs and health technologies, to help them make informed decisions based on the impact of new drugs, medical devices, diagnostics, and procedures on our healthcare system. To prepare for the arrival of CAR-T in Canada and to establish a robust review process of this therapy, CADTH has issued details of how their review of CAR-T will take place. CADTH welcomes comments about their process and Myeloma Canada is commenting on the suggested process.

For additional information on the CADTH review process for CAR T-cell therapies in Canada, click here .

Kyprolis Now Covered

in Ontario

Myeloma Canada is pleased to announce that as of April 30, Kyprolis (carfilzomib) is now covered by Cancer Care Ontario.

This is now the third province to fund Kyprolis, after British Colombia and Manitoba, and we would like to thank each and everyone of you who took part in our advocacy efforts to date by taking part in the MAP campaign .

Read full article

Help get Kyprolis funded in your province

Myeloma Canada Research Network

Learn more information about innovative and promising MCRN clinical trials that are recruiting in dozens of centres across the country.

Learn more about this clinical trial

Whitepaper: Improving Access to Innovative

Cancer Therapies in Canada

In April 2018, 13 patient organizations including Myeloma Canada signed and affirmed their position on a whitepaper called " Improving Access to Innovative Therapies in Canada " (English only). In this paper, we argue that there is a an unethical and unnecessary gap in access to innovative new cancer drug therapies, effectively denying or delaying potentially life-saving treatment for many cancer patients in Canada. We recognize that affordability and appropriate prescribing are crucial, but so is accessibility and they are not mutually exclusive. pCODR in partnership with the pan-Canadian Pharmaceutical Alliance (pCPA) must develop solutions to deal with uncertainty more effectively, beyond a negative recommendation. We propose that new mechanisms accelerating access to promising new cancer therapies are essential toproviding seriously ill patients with effective, safe treatment choices in a timely manner to improve quality of life and increase survival rate.

View the Whitepaper

Ground-breaking Canadian Research:

Umbilical Cord Stem Cell Transplant

in Multiple Myeloma

On May 8, a myeloma research news article on umbilical cord stem cell transplant in multiple myeloma was featured in Montreal-based newspaper “La Presse Plus”. A great review showcasing the work of Dr Jean Roy from Maisonneuve-Rosemont Hospital, and Principal Investigator of the innovative clinical trial “ECT-001 (UM171) Expanded Cord Blood Transplant to Treat High-risk Multiple Myeloma”, Dr Guy Sauvageau from Université de Montréal. The molecule, discovered by Dr Sauvageau, has successfully increased the number of stem cells contained in the umbilical cord by 30 to 50 times, making umbilical cord stem cell transplants a new treatment possibility for adults living with myeloma. This breakthrough provides with us hope for a higher success rate for patients receiving a third-party donor stem cell transplant (allogeneic stem cell transplant). Currently, there are 10 patients participating in this study, and the first transplant of this kind took place last week!

Kudos to the team of Canadian researchers at Maisonneuve-Rosemont Hospital (an important partner of the Université de Montréal Myeloma Canada Chair on multiple myeloma), for making their mark on the international myeloma treatment landscape and for making waves in improving patient outcomes.