My mentor, Aldo Del Col, co-founder of Myeloma Canada, entrusted me with the responsibility to be a voice for the myeloma community, often reminding me, “If you are not at the table, you are on the menu.” More recently, I’ve embraced the motto, “Nothing about us without us,” which has become central to my advocacy approach. 

Throughout my life, integrity, honesty, and alignment have and remain my core beliefs, values, and guiding principles. I would venture to say others recognize these qualities in me, which is in large part, why my insights and opinions are sought and valued by third parties with whom we collaborate. I always tell it as it is, offering a transparent perspective from the patient community I represent. I feel privileged to be in this role and strive to bring wisdom and substance to the table, not simply complaints. 

As a participant, author, and spokesperson on numerous health policy initiatives, I’ve shared the voices of the Myeloma Canada community and, in some instances, represented a broader cancer population.

With so many systemic issues affecting those among us living with disease, there is no shortage of opportunities for advocacy. And so, one must be selective about where to focus efforts. Each commitment represents a chance to generate ideas and implement solutions that can drive meaningful change.

The I2U project is one such initiative where I was invited to serve on the advisory committee alongside some exceptional minds. I2U is one example of a tool with the potential to frame real problems, identify actions, and set priorities for healthcare advocacy. As stated on their website:

“Focused on accelerating the path from “Idea to Utilization,” I2U is an initiative, made possible by Novartis Canada, that is committed to offering health system leaders the knowledge, support and information they need to be better capture the full value of future breakthrough medicines.” 

My role is to bring the patient’s perspective to this endeavor. The project, led

by Dan Carbin, Ross Wallace, and Rosa Stalteri, is guided by insights from respected health leaders including Dr Shaan Chugh, internal medicine physician

at Trillium Health Partners and Cleveland Clinic Canada in Toronto; Zayna Khayat, VP of Business Development & Strategy with Teladoc Health; Marcel Saulnier, health policy consultant and Associate at Santis Health; Graham Statt, Chief Administrative Officer for the District of Summerland, British Columbia; Helen Stevenson, Founder and CEO of Reformulary Group in Toronto; Dr Robyn Tamblyn, Professor of Medicine, James McGill Chair and Medical Scientist at the McGill University Health Centre in Montreal; and myself.

To learn more about each member of the I2U advisory board, click here. 

The I2U toolkit is a valuable resource for anyone looking to drive systemic change in healthcare. It identifies the critical elements required to integrate new technologies into the healthcare system whether these elements already exist, need modification, or must be created. These elements span from

• equipment and diagnostic tools,
• treatment guidelines, and
• resources—both human and financial—that are essential for patient care.

Notably, the toolkit’s value lies in its ability to identify these needs years before a technology’s entry, allowing stakeholders to prepare and implement necessary adjustments proactively. For patient advocacy groups, this tool provides a foundation to advocate for necessary systemic changes and to monitor progress. 

I encourage all my fellow patient advocates to utilize the I2U toolkit, as it offers a blueprint to initiate change in the healthcare ecosystem that impacts our collective access to innovations. As my colleague Jessy Ranger, Myeloma Canada’s Director of Patient Programs, Health Policy & Advocacy, aptly put it,

“People with blood cancer are offered the best of science and the worst of bureaucracy.”

This tool is a step towards closing that gap and ensuring timely, effective access to lifesaving technologies. (For insights from a myeloma perspective, I invite you to read a recent article in the Toronto Star, “The changing landscape of Multiple Myeloma: Where we are now and what’s next”.) 

We must do better, and we can

do better. 

Below is the abstract from the Canadian Association of Population Therapeutics (CAPT) presented in an oral presentation by members of the I2U advisory board in October 2024 in Toronto. Alternatively, to watch the video, click on the thumbnail.

Another important initiative, led by Michelle Oana, Myeloma Canada’s Director of Development and Community Relations, aims to provide real solutions to the ongoing challenge of low patient enrolment in clinical trials.

With the emergence of novel therapies, clinical trials are becoming more complex which is increasing the burden on patients and resulting in inequitable access to care, higher costs, slower patient accrual, and biases in study results. Establishing a navigation model that incorporates Equity, Diversity, and Inclusion (EDI) practices within these complex trial environments is essential. Such a model can improve trial efficiency, cost-effectiveness, and research quality while ensuring that equitable access to the best possible care remains the priority. 

The initiative, called Phase 0, kicked off this past April, with full design set for Spring 2025.

At the April meeting representatives from all groups involved in clinical trial procedures – pharmaceutical sponsors, clinical research organizations (CROs), researchers, clinical research nurses, hospital administrators, and advocacy groups anchored by patients – gathered to workshop through solutions for operationalizing EDI in clinical trial accrual.

Phase 0 will focus on developing tangible solutions to enhance patient engagement and reduce enrolment barriers, starting with a pilot project for an upcoming blood cancer trial. The project will assess the most effective strategies for implementing this pilot and outline a framework for measuring outcomes and impact in a real-world setting. 

I am confident that through Phase 0 and the leadership of Myeloma Canada, we will discover a sustainable solution to improve patient enrolment in clinical trials.

To learn about the HealtheMatters Impact Series, Phase 0 click here.

To read the full report, click here.

My team and I are proud to be working for you, to find solutions to complex problems, and ultimately to find ways to improve your lives that have been, in one way or another, affected by myeloma. 

Best, 

Martine 

Resources:

• I2U
• I2U tools
• Canadian Association of Population Therapeutics
• The changing landscape of Multiple Myeloma: Where we are now and what’s next.
• Phase 0: Promoting Equity, Diversity and Inclusion (EDI) in Clinical Trial Accruals
• Health eMatters Impact Series