Martine Elias, Myeloma Canada
Executive Director
|
|
"Each and every Canadian with myeloma, regardless of the city, province or territory in which they live, has the right to the same quality care and treatments. It is appalling that someone living in PEI does not have access to Daratumumab even though it is approved by Health Canada and available and covered in almost every other province, or those living in more remote or rural areas must incur thousands of dollars – out of pocket – to travel to the closest major city for live-saving treatments. Last November, we introduced you to Mike and Dale who had to pay an astonishing $73,000 of their own money for the treatment Dale needed because at the time, their request for reimbursement was denied by their insurance company. And they are sadly not alone. "
|
|
I - A new partnership for Myeloma Canada : BioCanRX Cancer Stakeholder Alliance |
|
|
|
We’re thrilled to announce that this past January, Myeloma Canada became a member of the BioCanRX Cancer Stakeholder Alliance (CSA). We’d also like to congratulate Myeloma Canada’s own David McMullen for being recruited to BioCanRX CSA Working Group.
|
|
BioCanRx, Canada’s Immunotherapy Network, is a network of scientists, clinicians, cancer stakeholders, academic institutions, NGOs and industry partners working together to accelerate the development of leading-edge immune oncology therapies for the benefit of patients. Their vision is to cure patients and enhance the quality of life of those living with cancer. BioCanRx invests in leading edge immune oncology research translating world-class technologies from the lab into early phase clinical trials.
BioCanRx provides researchers with access to funding, expertise, training and manufacturing facilities and is a leader in the translation, manufacture and adoption of cancer immunotherapies. The network is committed to training and developing the talent needed for a thriving health biotechnology sector in Canada. BioCanRx receives funding from the federal government’s Networks of Centres of Excellence, and support from industry, the provinces and charities. The network is hosted by the Ottawa Hospital Research Institute.
|
|
II - Optimizing Diagnosis in Canadian Cancer Care |
|
|
|
Myeloma Canada was pleased to be involved in a new report highlighting where improvements are needed in cancer diagnosis with All.Can Canada. The report, ‘Optimizing Diagnosis in Canadian Cancer Care’ highlights seven outcomes that are critical to a quality diagnosis experience and makes actionable recommendations to improve the state of cancer diagnosis for people in Canada.
All.Can Canada is a patient-led, multi-stakeholder initiative committed to ensuring swift, accurate, and appropriately delivered diagnosis of cancer in Canada.
|
|
III - Positive recommendations by CADTH for daratumumab and isatuximab |
|
|
|
CADTH has recommended the reimbursement of two important treatments, with conditions on usage:
-
Daratumumab (Darzalex) SC in combination with bortezomib, cyclophosphamide, and dexamethasone, for the treatment of adult patients with newly diagnosed light chain (AL) amyloidosis – see full report
-
Isatuximab (Sarclisa) in combination with carfilzomib and dexamethasone for the treatment of patients with multiple myeloma who have received at least one prior therapy – see full report
|
|
The final recommendations were published on February 15, 2022. Thank you to all our community members who took part in our surveys and gave us the chance to present a report with the myeloma community perspective. We'll keep you posted as new developments arise.
|
|
Take action for Multiple Myeloma Awareness Month!
We're asking you to bring the public’s attention to myeloma by sending a letter to editors and health ministry representatives across the country.
|
|
Through raising Canadians’ awareness for multiple myeloma, we can educate them on the early warning signs of the disease, and open the door to dialogue with the medical community and government authorities for equitable access to healthcare services, innovative therapies, and clinical research. |
|
|
Our volunteers have already called on all levels of government across our vast country to officially proclaim March 2022 as “Multiple Myeloma Awareness Month.” Many jurisdictions in Canada, the United States and around the world have already done it.
By participating in our advocacy campaign and helping us make March “Multiple Myeloma Awareness Month,” you will help improve the quality and length of life for people living with this incurable blood cancer.
Click on the button, add your name, email and postal code, to automatically send your letter today!
|
|
Our 2022 Multiple Myeloma Awareness Month
campaign is live!
|
|
Announcing our 2022 Multiple Myeloma Awareness Month campaign:
You M4T T3R. Your POSTAL CODE Shouldn’t.
|
For those of you who may be a bit unsure of what M4T T3R is…it’s our cheeky way of reinforcing that your postal code shouldn’t M4T T3R (MAT TER) more than you do, especially when it comes to accessing timely diagnoses, newer and better treatments, innovative clinical trials, and proper healthcare.
|
|
Last year, our focus was on individual empowerment to bring awareness to our cause. This year, we’re going one step further. An empowered and educated community has the ability to do great things. To advocate for change. To stand up and use our voice to address the huge disconnect that exists across Canada when it comes to healthcare. |
|
And so, this year, we’ve developed an impactful, multi-tiered campaign that not only brings awareness to myeloma but advocates for all Canadians living with this disease to have the right to quality healthcare and services. The visual components below will be promoted on Facebook, Twitter, Google and on myeloma.ca with a call to Learn more.
|
|
Teaser – Starts February 24th
on our digital and social media outlets.
|
|
Starts March 1st on our digital and social media outlets, and will be complemented by a direct mail piece mid-March.
|
|
I - Join us in raising awareness for myeloma! |
-
Contact us about sharing your story on Myeloma Canada’s social media
-
Use our original artwork to jazz up your social media and digital platforms
- Share, like, repost. Repeat!
|
|
Contact Marcie Baron, Myeloma Canada’s Director, Corporate Communications and Marketing at mbaron@myeloma.ca to learn more.
|
|
II - Help get March proclaimed "Multiple Myeloma Awareness Month" across Canada! |
We’re also tying our 2022 Multiple Myeloma Awareness campaign in to a provincial awareness/advocacy program! Our goal is to have every province and territory across Canada declare March as their official “Multiple Myeloma Awareness Month”.
|
|
See our "Taking Action" section above for more information, or contact Jessy Ranger, Myeloma Canada’s Director, Patient Programs, Health Policy & Advocacy at jranger@myeloma.ca.
|
|
|
|
What's new at Myeloma Canada |
|
I - Sign up now for the 1st annual Myeloma Canada Ride: Bike to Beat Myeloma!
|
|
|
|
Funds raised through The Myeloma Canada Ride will support scientific advancements and impactful research initiatives that enable Canadians with myeloma to live longer and better lives, and to help find a cure.
For more information, click here or contact Michelle Oana, Myeloma Canada's Director, Development and Community Relations at moana@myeloma.ca.
|
|
II - New recipe available in our “Wellness” section
Our second recipe card has arrived!
|
Gill Compton, Certified Naturopathic Nutrition / Natural Chef, has created for us a nutritious Green Smoothie recipe, Check it out in our wellness section on our website.
Green smoothies are the quickest and easiest way to pack in your nutrients without having to put mountains of greens on your plate should your appetite be reduced. They also produce very little waste.
|
|
|
III - New & improved! Myeloma Bone Disease InfoGuide |
|
|
|
Created specifically for people living with myeloma, their families, and caregivers, this InfoGuide helps you better understand myeloma bone disease and the many options for its management and treatment.
The Myeloma Bone Disease InfoGuide provides tips on how to overcome challenges, such as pain and difficulties moving around, and information you need to make informed treatment decisions with your medical team.
|
|
Visit the Resources section on myeloma.ca, for our growing library of publications. If you would like to order a printed version of this or any of our other materials, either email us at contact@myeloma.ca or call, toll-free: 1-888-798-5771.
|
|
News of a myeloma relapse can be upsetting. Your mental and emotional health may very well be impacted as you come to terms with this new stage in your myeloma journey. Myeloma Canada’s Mental Well-being and Relapse: A resource guide for people living with myeloma is a comprehensive support tool designed specifically to help you manage your emotional and mental well-being as you or a loved one experience a relapse. Download these important resources today.
|
|
V - $ 6,354 raised to “BID Away Myeloma.”!
Hear ye, hear ye, our 2nd annual “BID Away Myeloma” online auction has now come to an end! Thank you to everyone who participated and for making this event a huge success. Together, you raised $6,354!
Proceeds from BID Away Myeloma. go to help our mission of improving the lives of Canadians impacted by myeloma and help to move us closer to a cure.
|
|
|
Whether you decided to treat someone you love - or better yet, yourself - with something special for Valentine’s day, or just for the cause, we thank you for your amazing support!
|
|
|
|
Spotlight on Cyndi Logan:
The difficult challenge of weighing my options amidst uncertainties
|
|
|
|
"I was diagnosed with multiple myeloma in 2015 when I was 39 years old.
...When I did finally relapse this past September, I was able to access daratumumab with fantastic results. My next recommended treatment is a second stem cell transplant in Vancouver. The fear of this procedure causes me to be very apprehensive as the toxicity I experienced with my first stem cell transplant took a huge toll on me and my body. It took over a year for me to fully recover the last time.
...Along with the fear and trepidation of the actual treatment, the burden of having to stay in Vancouver for a month is financially something my family and I cannot afford."
|
|
Join us online from the comfort of your own home!
All you need is a computer, tablet or smart phone and an internet connection.
Full information on upcoming webinars is available in our 'News & Events' section, or by clicking here.
|
|
|
Presented by the International Myeloma Foundation (IMF)
Thursday, March 10, 2022
7:00 - 8:00 pm EST
|
|
 |
All webinars are available for free viewing on Myeloma Canada's YouTube channel.
|
Click on the image to access Myeloma Canada's
YouTube channel.
|
|
|
|
Past webinars
Click on the title to view the recording:
|
|
|
|
Our website includes a section dedicated to COVID-19 and its impact on our community. Please visit it often for regular updates and resources you can trust.
|
|
|
COVID-19 related articles:
|
|
COVID-19 related webinars |
|
International Myeloma Foundation
Saturday, Feb. 26, 2022
10:00 - 11:00 am EST
|
|
|
All webinars are available for
free viewing on Myeloma Canada's YouTube channel.
|
Click on the image to access Myeloma Canada's
YouTube channel.
|
|
|
|
Past webinars:
Click on the title to view the recording:
|
|
|
|
Join our family of volunteers today!
Meet and get involved with your myeloma community
|
Would you like to take part in Myeloma Canada’s activities? Engage with others in your area whose lives have also been impacted by myeloma? Advocate for patient rights? Organize meetings for people living with myeloma and their caregivers? Create or participate in exciting fundraising activities?
|
|
|
|
|
Myeloma Canada is here to support you along every phase
of your myeloma journey.
Please consult our website at myeloma.ca for up-to-date news and information,
as well as the following helpful links:
|
|
In these difficult times, you, our community, remain our number one priority.
Now more than ever, we appreciate your support. Your donation enables us to continue
providing you with the best information, resources, programs and services - across as many
technology platforms as possible - to stay empowered, informed and connected, while funding
research to help find a cure for this disease.
Thank you for your generosity and for helping us help you.
|
|
Follow us on social media for the most up-to-date information and resources: |
|
Si vous préférez recevoir cette Infolettre en français, écrivez-nous à contact@myelome.ca.
|
|
Myeloma Canada's mission: To improve the lives of Canadians impacted by myeloma through awareness-building, educational efforts, advocacy, fostering an empowered myeloma community and support of clinical research so that a cure may be found.
|
|
|
|
|
|
|
