When I look back at how the myeloma landscape has evolved from when Myeloma Canada was first created in 2005, I am truly in awe. Back then, there was a total of 1 myeloma drug approved for use in Canada and it was not even funded in all provinces. Twenty years later, we’ve seen an incredible evolution of myeloma treatments approved for use and reimbursed in Canada. Today there are more than 11 individual myeloma treatments accessible for patients in Canada. This doesn’t include drugs in clinical trial or drug combinations (i.e, triplet and quadruplet therapies).  

Please take a look at some of our highlights: 

• We’ve grown our support for the Canadian myeloma community by 500%¹ with more than 50 local support groups throughout Canada, a unique online community platform called MC Lounge, and specialized virtual support groups. 

• We’ve increased awareness for myeloma across the nation by 23,5%². This has been accomplished through impactful campaigns, events and programs, and reinforced by your passion, openness to share your experiences (in person and online) and volunteer your precious time. 

• We’ve expanded the Multiple Myeloma March, originally created in 2009 by Maryse Bouchard, her partner Marcel, and Sylvie-Chantale Duquette, from 1 event to a projected 50 Marches in 2025. To date, this flagship event has brought in more than $8,000,000 for myeloma research and programs that are improving quality and length of life. 

• In 2018, we were the first to conduct the unique James Lind Alliance Priority Setting Partnership (PSP) for greater alignment between differing research agendas of people living with myeloma, caregivers and clinicians. From this process, the top 10 future research priorities in myeloma were determined and the foundation set for our robust science and research strategy which guides our research investment decisions. Since then, we have supported more than 20 research projects and are closer to a cure than we could have ever dreamt possible back in 2005. (Learn more here.)

• We’ve developed more than 31 partnerships with leading and respected patient organizations to strengthen our voice and presence in both, the Canadian and international health arenas. 



• To date, we have worked with more than 18 industry partners (pharmaceutical companies) who are passionate about our cause. These ongoing collaborations fluctuate and are essential for representing the realities and voices of people affected by myeloma. 

• In addition to being appointed to international councils and Boards, we also sit on more than a dozen Canadian committees, councils or Boards. Through our presence, leadership and expertise, we are able to further influence and advocate for the funding, creation and implementation of Canadian clinical trials as well as equitable drug access, approvals, and reimbursements for Canadians regardless of where they live in our vast country. 

• We’ve been playing a key role in bringing access to essential drug therapies to Canadians. This started with advocating for Velcade funding in 2006, and has continued ever since. We provide government agencies with patient-feedback for drug-funding and reimbursement decisions, policy consultations, and more. By advocating for, and ensuring access to new game-changing treatments, like we did for access to daratumumab in PEI (2022), we’ve made a tremendous impact on the myeloma landscape and in the lives of Canadians.

Twenty years ago, the average prognoses for life with myeloma was 3 – 5 years. There are many prognostic factors to consider, but since then, survival rates have more than doubled, and the trend is continuing upward. While myeloma remains a challenging and oftentimes elusive cancer, the progress that’s been made on national and global fronts is exceptional, hopeful, and inspiring. New and emerging research is promising, and novel drug therapies like targeted immunotherapies (i.e. antibody–drug conjugates [ADCs], chimeric antigen receptor [CAR T] cells, and bispecific T cell engagers [BTEs]) have revolutionized the treatment of multiple myeloma³.

We thank you for your unrelenting support that enable

advances such as these. 

As we enter into our new decade, we look forward to a bright future for Canadians with myeloma. We will continue to support and invest in exciting innovations to help bring home a cure to the thousands of Canadians impacted by this challenging disease.  

We are more committed than ever to stay resolute and deliver on our mission/promise:

To improve the lives of all Canadians affected by myeloma by accelerating access to the best care while advancing research toward its

cure and prevention. 

Our community is everything to us. Your concerns, realities, and priorities are at the heart of all we do. As such, we will continue to maintain our grassroots and person-centric focus through various volunteer led councils such as the Patient Advisory Council, the National Advocacy Committee, and the myeloma awareness committee.  

Over the past 20 years, we have built and sustained vital inter- and cross- disciplinary relationships with other leading like-minded partners. Moving forward, we will continue to focus on:

• improving quality and length of life for people whose lives have been affected by a myeloma diagnosis,
• closing the gaps between clinical and real-world evidence research, and
• investing in vital life-extending research that will lead to a cure. 

We are thrilled to announce that after many years, we now have an updated vision: Life uninterrupted by myeloma.

Inspired by Glenn Hussey, Chair of the Patient Advisory Council, our vision will serve as our North Star if you will, further guiding us in our endeavours. It was important that our updated vision spoke to the soul of our community, reflecting the words and sentiments we so often hear.

We don’t believe in visions that are overly inflated or unrealistic. To us, a vision must be relatable, human, inspiring, and above all, attainable in the future. “Life uninterrupted by myeloma” frames the reality of wanting life as it was before diagnosis, uninterrupted by the disease, even once a cure is found.

With all of that to digest, it should come as no surprise that our number one commitment is, and will always be, to you. As such, we plan on celebrating our 20th anniversary by honouring you and the trust you have put in us. That means no galas, no elaborate celebrations, and no deviating from our vision and mission.

This year, as we do every year, we will pour our heart and soul into fulfilling our commitments to you so that we can get the thousands of Canadians with myeloma one step closer to realizing a life uninterrupted by myeloma…and a cure. 

Thank you for your unwavering support and belief in us. Together we will

get there!

Best,

Martine

Footnotes and references 

¹Support groups within the Myeloma Canada support group network grew from 1 in 2005 to over 50 today. Find out more.

²Patient Voice Partners, Myeloma Community Survey: Patients, Caregivers, Health Care Professionals, and Industry – March 2024 

³Just scratching the surface: novel treatment approaches for multiple myeloma targeting cell membrane proteins, Paola Neri, Noémie Leblay, Holly Lee, Annamaria Gulla, Nizar J. Bahlis & Kenneth C. Anderson; Nature Reviews Clinical Oncology volume 21, pages 590–609 (2024) 

Handy links:

• MC Lounge
• Myeloma Canada local support groups
• Myeloma Canada virtual support groups
• Myeloma Canada Multiple Myeloma March
• Myeloma Priority Setting Partnership (PSP)
• Myeloma Canada funded research
• Myeloma Canada partnerships
• Advocacy and drug access
• Myeloma Canada drug access navigator tool
• Clinical trials
• Patient Advisory Council



Myeloma Canada charitable number: 862533296RR0001