A Word from our CEO

As we begin a new year, I want to pause and recognize something truly extraordinary. Myeloma Canada’s Giving Tuesday fundraising campaign surpassed every expectation, raising an incredible $95,000. What unfolded was more than fundraising success. It was a powerful expression of trust, urgency, and collective resolve from you, the myeloma community. At a moment when access to a life-extending treatment was placed in jeopardy, thousands of you chose to stand up, speak out, and act.

From Negotiation Breakdown to Urgent Advocacy: Why We Had to Act

At the centre of this campaign was Carvykti®, the only CAR-T therapy currently recommended for funding for myeloma in Canada. When pricing negotiations between the pan-Canadian Pharmaceutical Alliance (pCPA) and the manufacturer ended without agreement in the fall, access to this treatment was suddenly at risk. (Learn more about the Carvykti® decision) We centred our campaign on Carvykti® not only because it is an important therapy, but because it exposed a much larger and deeply concerning issue: Canadians facing unacceptable delays or outright barriers to treatments that are already approved by Health Canada and transforming lives elsewhere in the world. There was an urgency for us to act.

The response from our community was swift, passionate, and decisive. Nearly 6,000 letters were sent by patients, caregivers, and supporters to elected officials across the country, urging governments to re-engage and find a path forward. These letters were grounded in your lived experience. They reflected fear, hope, and determination, and they made one thing unmistakably clear: delays in access are not abstract policy problems; they have real consequences for people living with myeloma today.

Community Mobilization at the Provincial Level

Alongside this unprecedented community mobilization, Myeloma Canada intensified its advocacy efforts at every level. One particularly powerful example came from British Columbia, where a patient living in the Premier’s constituency was able to meet directly with him to share her experience and concerns. As a result of that patient-led engagement, Myeloma Canada will be meeting with the Premier and the Minister of Health in the new year to continue these discussions and advocate for progress on access.

We had an important meeting with Quebec’s drug plan leadership, while, in Alberta, we are working closely with the local myeloma community, including the Southern Alberta Myeloma Patient Society (SAMPS) and the Myeloma Alberta Support Society (MASS), to secure meetings with drug plan decision-makers and advance discussions on access and readiness. As governments return to work in the new year, we will be engaging additional key leaders in Ontario and other provinces. These province-by-province efforts are deliberate and necessary, given the current realities of how drug funding decisions are made in Canada. More to come in the next months in this.

Discussions at the National Level

At the national level, we have maintained ongoing dialogue with the manufacturer and met with the new President of Johnson & Johnson Canada to reinforce both the urgency of the situation and the need to identify viable paths forward. We also had a meeting with the head of the pCPA. These conversations are not always easy, but they are essential. Progress requires persistence, credibility, and a willingness to stay engaged even when the road is complex and uncertain. 

Our Responsibility to You

With this extraordinary mobilization came an immense honour and an equally immense responsibility. The $95,000 raised through the Giving Tuesday campaign will be used directly to implement and sustain our advocacy plan in the months ahead. These funds support government relations work, policy analysis, patient engagement, and communications efforts designed to move this issue forward in a strategic and responsible way. Every dollar entrusted to us is being used with intention, accountability, and urgency. Funds will be used to improve access to innovative treatments to myeloma as many more are coming very soon behind the CAR T.

At this time, we have closed the email-writing campaign to allow space for ongoing discussions and next steps. Effective advocacy requires knowing when to apply pressure and when to create room for dialogue. Should circumstances require us to re-activate a community campaign with a new message early in the new year, we are confident and deeply grateful that this community will once again stand behind us. What you demonstrated over the past months is that when people living with myeloma come together, decision-makers listen.

I would be remiss not to acknowledge the leadership and dedication of the Myeloma Canada team driving this work forward. I am deeply grateful to Jessy Ranger, Director, Patient Programs, Health Policy & Advocacy, and Aidan Robertson, Advisor, Health Policy & Advocacy, for their ongoing leadership, strategic insight, and tireless commitment to this campaign. Their work alongside the voices of patients and caregivers has been instrumental in advancing this effort with integrity and focus.

Looking Ahead: Myeloma Canada’s Advocacy in 2026 

Looking ahead, our advocacy work will not stop with Carvykti®. This campaign has reinforced the urgent need for a more responsive and equitable system; one that can keep pace with scientific innovation and ensure that patients are not left waiting while time runs out. We will continue to push for solutions that reflect both medical progress and human reality, working collaboratively with governments, clinicians, researchers, partners, and most importantly, patients.

I also want to extend my heartfelt thanks to the donors who support Myeloma Canada throughout the year. Your generosity fuels far more than any single campaign. It enables research investments, education and support programs, and the sustained advocacy required to drive meaningful, lasting change.

As we step into 2026, I do so with deep gratitude and renewed determination. What we have accomplished together over the past months is a powerful reminder of what is possible when a community is united by purpose. Thank you for standing with us and for helping shape a future where access to care is defined by need, not delay. We will continue to keep you posted on the outcomes of this advocacy campaign.

Wishing everyone a very Happy New Year, health and love for 2026.

Martine