September is Blood Cancer Awareness Month, a time to recognize everyone affected by blood cancers (including leukemia, lymphoma, and multiple myeloma) and to stand alongside the organizations and communities working to improve their lives. 

At Myeloma Canada, March is our principal awareness month. It is when we join the global community in marking Myeloma Action Month and focus national and international attention on the realities of living with myeloma. But our commitment to advocacy and collaboration extends well beyond March. We are proud to stand in solidarity with people affected by all blood cancers. Although diagnoses and experiences may differ, our communities share many of the same challenges: receiving a timely diagnosis, finding reliable information, navigating a complex healthcare system, and gaining equitable access to promising treatments. 

It’s peak Multiple Myeloma March season 

September is also a particularly special time for our myeloma community because it marks the height of our Multiple Myeloma March season. Across the country, people living with myeloma, their families and friends, caregivers, healthcare professionals and supporters come together to walk for 5km, connecting, and raising funds along the way. 

An important time in treatment reimbursement negotiations  

September 18 was the first anniversary of the deeply disappointing decision to conclude the national reimbursement negotiations for Carvykti without an agreement. Carvykti is a CAR T-cell therapy that offers significant hope to people with myeloma, particularly those whose treatment options are becoming limited. 

Following months of advocacy by Myeloma Canada and our community, the parties returned to the negotiating table in February. We welcomed that development with optimism. Yet, months later, the negotiations remain active and there is still no funding agreement. For people whose disease continues to progress, every month matters. They cannot put their myeloma on hold while our health system works toward a decision. 

This delay concerns me deeply, and I know that concern is shared throughout our community. 

Other innovations are also approaching. Anitocabtagene autoleucel, known as anito-cel, is a new CAR T-cell therapy for myeloma that is currently under review by Health Canada. Canada’s Drug Agency has also announced that it expects to invite patient-group input on anito-cel in November. Myeloma Canada will be ready to ensure that the experiences, needs and priorities of our community are clearly represented throughout that process. 

The progress of anito-cel is encouraging, but it also reinforces the urgency of resolving access to Carvykti. We cannot allow one CAR T-cell therapy to remain unfunded while another begins moving through the same approval and reimbursement pathway. Canada must be prepared not only to evaluate these groundbreaking treatments, but also to fund and deliver them equitably and without unnecessary delay. Getting the most effective treatments reviewed, approved, and reimbursed with expediency is a need that affects everyone with blood cancer. Scientific progress can only change lives when patients are able to benefit from it. 

In the coming weeks, Myeloma Canada will share more about the actions we are taking to advocate for access to CAR T-cell therapies. We will also let you know how you can help, so keep reading our newsletters! 

Come together 

In the meantime, I encourage you to join a Multiple Myeloma March in your community. Bring your family, your friends, and your neighbours. Walk, volunteer, donate, or simply start a conversation about myeloma. Let us enjoy the September sunshine but let us also use this season to make our needs visible and our voices impossible to ignore. 

Together, we are a strong and determined community. Together, we will keep pushing for the timely and equitable access that every Canadian living with myeloma deserves. 

Martine Elias   

CEO, Myeloma Canada