Approximately 7,500 Canadians are living with multiple myeloma, according to Myeloma Canada, a national nonprofit organization that aims to improve the lives of people impacted by myeloma.
The Biotechnologist caught up with Aldo Del Col, co-founder and chairman of Myeloma Canada and a myeloma patient himself, to discuss the organization, its work and the multiple myeloma landscape in Canada.
The Biotechnologist: Tell us about the origins of Myeloma Canada.
Aldo Del Col: Myeloma Canada was founded in 2005 by myself and another patient, John Lemieux. When I was diagnosed with multiple myeloma in 2002, I asked my hematologist if there were clinical trials; there was only one. I also asked if there were other patients to talk to or a support group in Montreal that I could join; the answer was no.
As I began my treatments, a thought kept gnawing at me: There is a need for an organization for patients and their caregivers who feel alone while trying to cope with the disease.
Responding to that need, I started a local support group in Montreal in November 2004. The national organization was founded shortly thereafter with the goal of bringing the community together to create a strong national voice and address the needs of patients and caregivers..
The Biotechnologist: What did you aim to address in the early work of Myeloma Canada?
Aldo Del Col: We developed four pillars — education, awareness, advocacy, and research — to engage the community of patients, caregivers, clinicians, industry and researchers.
Myeloma is a disease that few people are aware of. And it is often confused with melanoma. Therefore, education and raising awareness about the disease are important elements of what we do.
The Biotechnologist: How does Myeloma Canada meet the needs of the Canadian myeloma community?
Aldo Del Col: We are a grassroots, patient-driven, patient-focused organization. We are focused on bringing people together and reassuring patients they are not alone. Our very first awareness initiative reflected this focus: “Multiple Myeloma. Unknown. Unnoticed. Until Now. Myeloma Canada is here to help. You don’t have to be alone.”
With myeloma being a relapsing disease, it is important to have access to novel therapies. Innovative research has led to the discovery of several new myeloma treatments, not all of which are yet available to our patients. Wanting to ensure patients have access to these life-prologing treatments, we work with government agencies, doctors and local patient groups to reinforce our efforts in this regard.
The Biotechnologist: How has your experience as both a multiple myeloma patient and a pharmacist influenced your work?
Aldo Del Col: If I wasn’t a myeloma patient, I wouldn’t be doing what I’m doing. You really have to be a patient to understand what someone with the disease is going through. As well-intentioned as physicians and the pharmaceutical industry are, they don’t live with the treatment side effects, the daily aches and pains and the emotional ups and downs. As a patient myself, I’m very sensitive to that.
Being a pharmacist has helped me open doors that are otherwise closed to non-healthcare professionals. As a pharmacist, I am considered a credible healthcare professional which allows me to participate in advisory board and other medical meetings. Being a pharmacist gets me through the door; being a patient allows me to bring the patient perspective to those discussions. My unwavering position is that patients need to be present and listened to whenever and wherever there are meetings or discussions that impact us.
The Biotechnologist: How did the Myeloma Canada Research Network start?
Aldo Del Col: I was attending one of our educational events when I asked one of the experts in the field if our Canadian doctors regularly met to exchange ideas and collaborate. It turns out, they didn’t. I saw an opportunity to change that.
As a result, we created an annual event called the Myeloma Canada Scientific Roundtable in 2010. This annual gathering brings together clinicians, researchers, pharmaceutical and biotechnology companies and patients to talk, collaborate, exchange ideas, share experiences and develop made-in-Canada clinical trials.
A noteworthy outcome of these annual meetings was the creation of the Myeloma Canada Research Network (MCRN).
One of the most important roles of the MCRN is to bring new treatments to more patients in more centres across the country via investigator-initiatiated trials. Currently, we are investigating ways to enable patients in remote areas to participate in clinical trials.
The Biotechnologist: What would you tell someone who has been diagnosed with multiple myeloma?
I’ve seen a tremendous change in treatment options for patients.
When I was diagnosed, the available treatments were limited, consisting primarily of toxic chemotherapeutic agents that had been around for over 50 years. Fifteen years later, thanks to innovative research and medical advances, doctors have access to a growing toolbox of treatment options that are generally less toxic and more effective. The advances I have seen have been staggering.
When a newly-diagnosed patient calls me, I can honestly tell them that they there is a lot of hope because we’ve never had so many treatment options available to us. And there are more on the horizon.
For more information, and to find more patient and caregiver resources, visit Myeloma Canada online.
Multiple myeloma currently has no cure, but thanks to the work of organizations like Myeloma Canada advocating for patients, and the various treatment innovations and breakthroughs made over the years, the outlook for patients continues to improve.
Speak to your doctor about the treatments that might be right for you.