“The doctor gave me three to five years to live. I thought that wasn’t enough. I decided I would get ten.” This is how Aldo Del Col described his reaction to a diagnosis for multiple myeloma, the second-most common form of blood cancer. Sixteen years later he is the recipient of the Meritorious Service Medal by Governor General Julie Payette, in recognition of his work with Myeloma Canada. He spoke to Accenti just after receiving the award.
Aldo Del Col was born in Timmins, Ontario, in 1954. Originally from the Friuli region of north-eastern Italy, his parents immigrated to Canada shortly after the Second World War. At age 18, Aldo moved to Toronto, where he earned a Bachelor’s degree in Pharmacy, followed by a Master’s in Business Administration. He worked as a pharmacist and marketing executive until his diagnosis in the early 2000s.
The period leading up to the confirmation of his diagnosis, from late 2001 throughout most of 2002, illustrates one of the key problems surrounding multiple myeloma – the symptoms of the disease are common to other ailments, which makes it quite difficult for doctors to diagnose in the early stages. Even though Aldo remembers feeling the first symptoms around Christmas 2001, he did not receive an official confirmation until September 12, 2002.
Around this time, he started gathering information about multiple myeloma and its symptoms. As a form of cancer, the disease is caused by plasma cells in bone marrow that start multiplying uncontrollably, eventually crowding out the other, healthy cells. This causes a weakening of the bone structure, pain, fatigue, anemia and a weakening of the immune system. Currently, the disease remains incurable; however, there are treatments that can alleviate the symptoms and significantly improve patients’ quality of life.
With the information he gathered and his background both in pharmacy and administration, Aldo went on to co-found Myeloma Canada. At the time, the North American support network for myeloma patients was limited; there were a few organizations in the United States, but none in Canada. Inspired by what he saw in the United States, he started working on what would later become Myeloma Canada. In founding the organization, he says, “the goal was to create a coast-to-coast-to-coast support network for [Canadian] myeloma patients.” To this end, he outlined five core principles for the foundation: to educate patients and their caregivers; to raise awareness about myeloma; to advocate for easier access to treatment; to encourage research; and to foster community empowerment for patients.
While it works in many areas of the disease, the foundation’s main focus remains the patient. It is “patient-driven, patient-focused, and most of all, grassroots.” In meetings he attended with other organizations, Aldo had observed what it was like to forget to focus on the patient. He noticed that too often patients became “clients.” He swore that his foundation would never forget the individual. With this in mind, Myeloma Canada offers a panoply of resources for patients, ranging from emotional support to dietary advice. It also offers support to an often-overlooked group: caregivers. These are the partners, children, siblings and friends of patients, often the ones who care for the patient throughout their daily lives. As Aldo puts it, “it might even be harder on caregivers than on patients.” On the foundation website, a caregiver will find valuable information and support groups centred around their needs.
To help the research goals of the foundation, Aldo has also created the Myeloma Canada Research Network (MCRN). This organization focuses on facilitating research, as well as the transmission of patient information between doctors. One of their most important achievements is the creation and expansion of a pan-Canadian patient database. This will allow researchers to conduct their work on a larger scale and in a more efficient manner. So far, around a dozen Canadian hospitals have contributed to the project. The MCRN’s efforts also include the implementation of clinical trials in the treatment process, offering treatment options not yet covered by the healthcare system. All this is in an effort to “move the needle,” as Aldo puts it.
Aldo Del Col received the Meritorious Service Medal on November 5th, 2018 in a solemn ceremony at Ottawa’s Rideau Hall, the official residence of the Governor General – a beautiful recognition of his labour. Sixteen years after his initial diagnosis, Aldo is looking forward to his next milestone – getting his senior citizen card, in February 2019.
Alex Vaillant-Gamelin is an Honours Student in the English Department at Bishop’s University,
currently interning at Accenti.
Photo: Sgt Johanie Maheu, Rideau Hall © OSGG, 2018