Martine Elias, Executive Director | |
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Hi everyone,
I hope this finds you well and enjoying these beautiful crisp days of Fall. It’s hard to believe that the Vancouver March on October 23rd marked the last of our Multiple Myeloma Marches for 2022.
There were more than 35 participating communities, not including all of the virtual and affiliate events that took place!
We’re forever grateful for your inspiring passion, commitment, and participation. Thank you!
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Montreal
Multiple Myeloma March 2022
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Airdrie
Multiple Myeloma March 2022
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Prince George
Multiple Myeloma March 2022
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Improving the lives of Canadians impacted by myeloma.
How do we make this more than just a statement? By providing and/or developing resources, initiatives and programs that fall within our 5 essential – and frequently interconnected - pillars: community empowerment, education, awareness, advocacy, and support of science and research.
Please keep reading for highlights of our many advocacy initiatives and successes from the past 12 months.
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Advocacy and Myeloma Canada | |
Too often we throw around terms with the expectation that everyone understands what they mean. I’d like to take a minute and explain what we mean by advocacy and our advocacy initiatives. | | |
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Essentially, when you do something with the intent of influencing decisions for positive change – whether political, social, economic, or personal – you’re advocating. Advocacy is simply an activity or action of an individual or group that speaks in favour of, recommends, argues for, supports, defends, or pleads on behalf of others or one’s self. When you stand up for something you believe in and present your reasons, you’re being an advocate! | |
While there are many types of advocacy, at Myeloma Canada, we pretty much focus on 2: government (policy) and personal (individual) advocacy. The initiatives that follow primarily showcase our government (policy) advocacy efforts on behalf of Canadians living with myeloma. | |
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I - Provincial, territorial, and municipal advocacy for myeloma awareness
Multiple Myeloma Awareness Month and Day (March 2022)
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Myeloma Canada organized and backed our incredible community of volunteers in a Canada-wide, community-driven initiative to have the month of March proclaimed Multiple Myeloma Awareness Month in every province and territory.
The program was supported by a toolkit/handbook and a nation-wide, community-based letter-writing program through which community members were able to easily send pre-drafted letters (and if they chose, personal stories) to their local newspaper Editors and Health Ministry representatives.
Several of these letters were also published in print and online. Additionally, the letter-writing platform was used to request municipalities across Canada to proclaim March 31st as Multiple Myeloma Awareness Day. (See our wins at the end of this article.)
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II - Ontario election – advocacy for cancer care | |
Before the Ontario elections, we worked closely with Myeloma Canada’s Ontario Advocacy Committee on an Ontario-wide letter-writing campaign. The letter, which was submitted to 665 candidates in 83 electoral districts, requested candidates to strongly, and formally, commit to fight for increased support in cancer care to improve quality and length of life for Ontarians living with cancers like myeloma. | |
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III- Treatment and access: surveys, focus groups, and patient input
Myeloma Canada develops, organizes and conducts patient and caregiver surveys to gather data and better understand the impact of myeloma and its treatments on those affected by this disease.
Focus groups: 4
This year, we held 4 focus groups on specific myeloma treatments with manufacturers of these drugs to gather feedback from patients and their loved ones.
Submissions and surveys to the Canadian Agency for Drugs and Technologies in Health (CADTH): 2
With invaluable feedback from our community, Myeloma Canada provided input to CADTH on 2 treatments for myeloma patients. Furthermore, in conjunction with the Myeloma Canada Patients Advocacy Committee, we provided CADTH with our comments on a new version of their Draft Reimbursement Algorithm which will determine the sequence of drugs used to treat myeloma.
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IV - Drug consultations and negotiations | |
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1. pan Canadian Pharmaceutical Alliance (pCPA)
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Myeloma Canada worked very hard to get subcutaneous daratumumab (sub-q) listed and available in all provincial and territorial formularies. We’re thrilled to say that the drug is now listed in all provinces! We're still working on territorial listings.
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We are continuing to advocate for isatuximab and its two combinations (one with carfilzomib and the other with pomalidomide) to be accessible to all qualifying Canadians with myeloma. Isatuximab is used for the treatment of relapsed and refractory multiple myeloma.
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2. Provincial reimbursement issues regarding lenalidomide (generic version of Revlimid)
Reimbursements for the generic version of Revlimid remain problematic in all provinces. We are constantly monitoring the situation and taking action where and when necessary so that all patients have access to the best options available, generic or not.
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3. Clinical trial access in Quebec
Myeloma Canada has been appealing to the Quebec government to change existing regulations limiting access to clinical trials for Quebec patients since 2018! A resolution seems to be in the works with further talks expected shortly.
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4. Occupational risks factors: Pesticide consultations in Quebec with the Pest Management Regulatory Agency (PMRA)
Quebec’s Bill 59 aims to modernize the occupational health and safety regime in Quebec; this is now becoming an important concern for us. We are advocating that myeloma be added to the list of recognized occupational diseases associated with pesticides.
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1. In the spring of 2022, Myeloma Canada organized a series of consultations with the Atlantic provinces’ governments to create awareness for drug access issues exacerbated by the COVID-19 pandemic, as well as to discuss adding drugs to their drug lists. The disturbing trend of recent years has shown that new drug therapies entering the market are generally added to the Atlantic provinces’ formularies 1 to 2 years later than other Canadian provinces. | |
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Subcutaneous (sub-q) daratumumab was the perfect example to draw upon since the original formulation, while approved and accessible throughout Canada, was not yet available in Prince Edward Island. We’re thrilled to say that our advocacy efforts were a success and now every Canadian province – with territorial approvals pending - has added daratumumab sub-q to their formulary…including PEI!
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2. Trevor Ives, one of the Directors on our Board, met with the Minister of Health in Saskatchewan to accelerate the listing of myeloma drugs for approval and use, as well as discuss the challenges surrounding living with myeloma, the need for more awareness, and more. | |
3. Jessy Ranger Myeloma Canada’s Director, Patient Programs, Health Policy & Advocacy, held a total of 12 meetings with many government and ministerial staff in Atlantic Canada to discuss challenges regarding drug policy issues, timing of access to drugs, delays in diagnosis, and other issues related to living with myeloma. Meetings took place virtually with New Brunswick, Newfoundland, Prince Edward Island and Nova Scotia. | |
VI - Strengthening our network of invaluable partnerships | |
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There is strength in numbers. That’s why we partner with many national and international patient organizations and coalitions to advance the cause of cancer in Canada. Together we help effect positive change for a more patient-focused environment.
Our growing network of partners includes:
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VII - Assets for our community: Myeloma Canada Advocacy Handbook | |
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In response to the many changes and challenges in our healthcare system, we overhauled our Myeloma Canada Advocacy Handbook. This new version addresses how to advocate for yourself, stay informed, ensure your voice is heard and your decisions respected. It also provides resources and references to make self-advocacy easier.
Launched at the Support Group Leaders’ Summit in April 2022 and complemented with a workshop, the Handbook is available as a free download from our website.
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Download the Handbook here | |
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Myeloma Canada’s advocacy initiatives are centred around ensuring your voice is heard. We firmly believe in being part of the discussion as early in the process as possible. This way, we lessen the opportunity for an unfavourable policy to be passed and going into ‘damage control’ mode.
Our seat at the table means we play an important, active and influential role advocating that our Canadian healthcare system moves in the direction of meeting the needs of every Canadian impacted by myeloma, regardless of their ability to pay, the colour of their skin, the language they speak, where they live, and where they receive care.
The advocacy work we do is essential for improving the quality of life and survival rate of Canadians living with myeloma.Your participation in, and support of, our fundraising events and initiatives throughout the year – both financial and physical – not only support our investments in science and research, but as importantly, are the backbone to our advocacy programs and successes. They provide us with the ability to further advocate on your behalf so that you have access to the drug therapies you need, and create the programs and tools that support and inform you.
With much thanks and gratitude,
Martine
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Myeloma Awareness Month/Day wins:
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Multiple Myeloma Awareness Month was proclaimed in Alberta, British Columbia, Manitoba, New Brunswick, Newfoundland and Labrador, Nova Scotia, Prince Edward Island, Saskatchewan, Northwest Territories, and Yukon. All but three — Ontario, Quebec, and Nunavut— requests were accepted.
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Community members in Saskatchewan and New Brunswick were invited to speak about myeloma at their provincial legislatures.
- Many members spoke to media about their lives with myeloma, generating coverage in Alberta (Lethbridge); BC (Langley, Comox Valley/Campbell River and Kamloops); Ontario (Barrie, Cornwall, Haldimand/Caledonia, Hamilton, Midland [Washago], North Bay, Orillia, and St Catharines); and Saskatchewan (Warman).
- 17 Canadian municipalities proclaimed Myeloma Awareness Month/Days including some major cities (Vancouver, Toronto, Calgary, Halifax, and St. John‘s).
- Eight municipal monuments were lit in red or burgundy: March 4: Calgary Tower, Edmonton High Level Bridge, Newfoundland and Labrador Government House; March 28 – 31: City of London sign; March 31: Niagara Falls (with a video link), City of Hamilton sign, City of Winnipeg sign, and City of Mississauga Clocktower.
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Your donation enables us to better serve the myeloma community. Thank you for your continued faith in all that we do. | | |
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Si vous préférez recevoir vos communications en français, écrivez-nous à contact@myelome.ca.
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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.
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