The path of progress for multiple myeloma
Annually across Canada, from August to October, members of the community organize, host and take part Myeloma Canada’s Multiple Myeloma March, the organization’s most important fundraising, community-building and awareness event. supplied
A 20-year journey of significant advances
In 2005, when Aldo Del Col co-founded Myeloma Canada along with John Lemieux, he had two main goals: to create a community for people living with multiple myeloma so they didn’t feel so alone and to catalyze research to lead to new treatments.
Del Col’s vision arose from personal experience. When diagnosed in 2002 with multiple myeloma, a form of incurable blood cancer, he asked his hematologist about clinical trials and learned there was only one. And when he asked if there were other patients to talk to or a support group in Montreal he could join, he was told no.
The promise of the founders has been realized in many ways. Twenty years after its founding, Myeloma Canada is a leading, internationally recognized patient organization powered by a strong community of Canadians with myeloma, their care partners, families and friends. And the programs and research the organization supports are helping to improve quantity and quality of life for those with the disease.
“In the past 20 years, we have seen significant progress for individuals with myeloma,” says Martine Elias, CEO of Myeloma Canada. “With a surge in scientific advances and tremendous breakthroughs in myeloma drug therapies, health outcomes have dramatically improved. Myeloma is becoming increasingly manageable, but it is still without a cure.”
Two decades ago, only one approved drug therapy was available in Canada (and it wasn’t even funded for reimbursement in all provinces), compared to more than a dozen individual myeloma treatment therapies that are approved today. With expanded options comes renewed hope for people with myeloma. Physicians now use combinations of therapies to further amplify the effectiveness of treatment and provide even more options to their patients for when myeloma returns or no longer responds to current therapy. New types of treatment, including immunotherapies designed to trigger the person’s immune system to identify and destroy myeloma cells, are generating much optimism about the future and a possible cure.
“Canadians with multiple myeloma are living longer, and they are living better lives. Twenty years ago, life expectancy was three to five years. Today, the average life expectancy reaches eight to 10 years,” says Ms. Elias.
“With the new options we’re seeing more and more people living a life that is uninterrupted by their myeloma, which is our vision.”
“The science is moving quickly. What we need is for government systems to catch up to the science and get these novel treatments and drug therapies to the people who need them, as quickly as possible, because their lives literally depend on it. ”
Challenges remain
While the myeloma community is encouraged by the progress, there is still much to be done and many challenges to overcome.
One key challenge is on the research side, explains Elias. “The goal has been to develop treatments such as immunotherapies that attack all the myeloma cells. By doing that, we can create drugs that produce extremely promising results, but they can generate some very strong adverse side-effects. One of our continuing scientific challenges is to develop effective drugs while limiting these difficult side-effects.”
Another challenge involves the health-care system and the processes in place to attract clinical trials to Canada, and to ensure that once the treatment therapies are approved, they are funded and available to be delivered as treatments.
“Canada is very good at producing and in attracting excellent researchers, and we have international experts leading clinical trial centres,” says Elias. “However, we’re competing with the rest of the world in attracting clinical trials, and sometimes our own health-care system presents barriers that can limit our ability to be competitive.”
In addition, the time between approval of a new therapy and when people with myeloma have access to it has increased in Canada, with other countries such as the United States providing more timely access. People with myeloma don’t necessarily have the luxury of time. They need these drug therapies now, she explains.
Working with all levels of government and decision-makers to address and rectify such systemic issues, and prevent them from occurring in the future, are important advocacy activities for Myeloma Canada.
“The science is moving quickly. What we need is for government systems to catch up to the science and get these novel treatments and drug therapies to the people who need them, as quickly as possible, because their lives literally depend on it,” says Elias.
Powering toward the future: ACCELERATING RESEARCH, RAISING AWARENESS AND
SUPPORTING THE COMMUNITY
The community of Canadians affected by myeloma is “the heart and soul” of Myeloma Canada, Elias says. Each of the 50+ peer support groups across the country are run by volunteers, with support from the organization. There are also seven virtual support groups and a private online space for the community.
“And members of the community are powering our awareness and fundraising initiatives,” she says. “From August to October, they’ll be organizing, hosting and participating in Myeloma Canada’s 17th annual Multiple Myeloma March. This year, 45 local marches will be held across the country, as well as virtual marches. These events help raise awareness for the disease, informing people of myeloma’s often vague signs and symptoms, which can prompt important conversations with their health-care providers. This is key, as early diagnosis leads to better outcomes.”
On the research front, Myeloma Canada continues to increase support for leading-edge Canadian science and research projects and initiatives. In 2024, the organization provided its highest-ever level of committed science and research funding and expects to increase that level further for 2025.
“I see Myeloma Canada as a multi-layered blanket to wrap around Canadians living with myeloma,” says Elias. “Our commitment to our mission is as strong as ever: 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.”
For more information, visit myeloma.ca
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To view the full report as it appeared in The Globe's print edition Blood Cancer Awareness Month