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Blood Health SICKLE CELL:
A Blood Health Issue The need for blood for sickle cell.
M Strengthening Canada’s Blood System Collaboration, research, and federal investments are strengthening Canada’s blood system and advancing care for Canadians with rare blood disorders.
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ealth Canada is responsible for administering the Blood Regulations for blood system safety and the Food and Drug Regulations for plasma-derived products. Blood establishments are responsible for processes that protect the safety of blood for transfusion. These processes are authorized by Health Canada’s regulatory authority for blood. A strong blood system depends on collaboration across governments and partners. Canadian Blood Services (CBS) and Héma-Québec operate the blood system at arm’s length from federal, provincial, and territorial governments. Provincial and territorial governments provide funding to blood operators and are responsible for safe and effective blood utilization. The federal government also provides $5 million annually to CBS for research and development to strengthen Canada’s blood system. In 2023, the Government of Canada announced the National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years. The Strategy supports improved access to drugs, early screening, patient registries, evidence-based decision-making, and rare disease research, benefiting those with rare blood disorders. CIHR is providing $32 million over five years to advance a Rare Disease Research Initiative, including $20 million to build a National Pediatric Rare Disease Clinical Trials and Treatment Network.
The Honourable Marjorie Miche Minister of Health
ore than 6,500 people in Canada live with sickle cell disease, a severe, inherited blood disorder that causes stroke, organ damage, excruciating pain, and shortened life expectancy. For many, donated blood is not simply supportive care — it is lifesaving treatment. But here is the problem: Canada does not have enough of the right blood for everyone who needs it. Patients requiring repeated transfusions need blood that is closely matched to reduce complications. Because blood-group characteristics are inherited, donors from similar ancestral backgrounds are especially important. This makes sickle cell a blood-health issue — and a health-equity issue. Systemic barriers, including Canada’s historical malaria-related donor deferral policies, have disproportionately limited blood donation from African, Caribbean, and Black communities. Canada cannot claim to have a truly inclusive blood system while patients struggle to find compatible blood. Sickle cell must be part of Canada’s national blood-health conversation — now.
Biba Tinga Caregiver, President & Executive Director, Sickle Cell Disease Association of Canada
To learn more about Sickle Cell Disease, visit sicklecelldiseasecanada.com. Read more online at healthinsight.ca.
This article was supported by Sickle Cell Disease Association of Canada.
Publisher: Arlene Asika Strategic Account Director: Anna Sibiga Content & Client Success Manager: Nicole Kansakar Country Manager: Samantha Taylor Creative Director: Kylie Armishaw Digital Traffic Manager: Vansh Chandwaney All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve Maclean’s Magazine or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com.
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How Innovation Could Ease the Pressure on Canada’s Plasma Supply With Canada struggling to meet immunoglobulin self-sufficiency targets, exploring innovative non-plasma treatment options must go hand in hand with increasing supply.
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mmunoglobulin is an essential component of the immune system that can be derived from donated human plasma and used to treat a range of immune, blood, and neurological conditions. It’s delivered to patients as either intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG). Demand for immunoglobulin is growing rapidly in Canada. According to Dr. Graham Sher, CEO of Canadian Blood Services, demand is expected to grow by more than 50 per cent over the next five years. Several factors are driving demand. Dr. Katerina Pavenski, Head of the Division of Transfusion Medicine at St. Michael’s Hospital in Toronto, says they include population growth, an aging population, a growing list of indications, and better access to appropriate care. Canada doesn’t manufacture IVIG or collect enough plasma to meet demand. “We heavily rely on IVIG manufactured elsewhere from plasma collected from paid American donors,” says Dr. Pavenski.
Managing supply and growing demand Canadian Blood Services and HémaQuébec are working to increase supply, but achieving self-sufficiency targets has been challenging. According to Canadian Blood Services, domes-
tic immunoglobulin sufficiency increased to 34 per cent this year, up from 27 per cent a year ago. While that represents progress, Canada is still heavily reliant on the U.S. for plasmaderived products. For some patients, immunoglobulin is irreplaceable. “In general, patients with immune deficiency do not have other alternatives, while other patients with autoimmune conditions, for example, may be treated with other agents,” says Dr. Pavenski. As a result, Canada needs to manage immunoglobulin demand carefully while expanding supply.
The role of innovative, non-plasma therapies Some autoimmune neurological conditions traditionally treated with immunoglobulin, now have innovative non-plasma treatment options for certain eligible patients. Treating autoimmune diseases with IVIG can require hundreds of plasma donations per year for a single patient. Having an alternative could reduce immunoglobulin demand, preserving it for patients without other options. “The availability of new therapies is an important step forward, but avail ability alone is not enough. Patients need practical, timely, and equitable access to the treatments their phys icians determine are appropriate,”
Patients need practical, timely, and equitable access to the treatments their physicians determine are appropriate. says John Haslam, General Manager of global immunology company argenx Canada. Access is a barrier. While immunoglobulin is provided at no direct cost to patients through Canada’s health care system, alternative therapies can be expensive and may not be funded, Dr. Pavenski notes. When asked what policymakers should prioritize to strengthen Canada’s immunoglobulin supply, her answer was direct: “Fund alternatives.” Alongside increasing domestic plasma collection, incorporating appropriate non-plasma alternatives for eligible patients can contribute to a more resilient, sustainable blood system in Canada. WRITTEN BY Tania Amardeil
Dr. Katerina Pavenski Head of the Division of Transfusion Medicine, St. Michael’s Hospital
John Haslam General Manager, argenx Canada
This article was made possible with support from argenx.
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BEYOND SURVIVAL:
Rethinking Care for a New Era of Multiple Myeloma While patients with multiple myeloma are living longer than ever thanks to innovation, the challenge now is delivering care that fits into patients’ lives and today’s busy clinics over the long term.
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ultiple myeloma is a rare, complex blood cancer that affects the plasma cells, which produce antibodies for the immune system. It is typically a relapsing disease, meaning it can return after periods of remission and often requires new lines of therapy over time. “The word ‘multiple’ is there because it can affect many organs,” says Dr. Philip Kuruvilla, a recently retired hematologist based in Toronto. “Multiple myeloma most commonly affects the bones and the kidneys, but really any organ can be affected.” Multiple myeloma is often misunderstood or misdiagnosed because its signs and symptoms can overlap with those of other health conditions. “Patients often go months and sometimes years before they’re diagnosed,” says Martine Elias, CEO of Myeloma Canada.
Living with a complex blood cancer A multiple myeloma diagnosis can affect every aspect of life, including work, family responsibilities, and daily routines. “It’s a disease that, despite best efforts with available treatments, isn’t always well controlled and can be quite symptomatic,” says Dr. Kuruvilla. “There can be many issues, such as infections resulting from the effects of both myeloma and its treatment on the immune system, bone complications such as fractures and pain, and kidney failure. Managing treatment often requires ongoing vigilance to
reduce the risk of complications and side effects, which can be stressful for patients and caregivers.” Despite advances, multiple myeloma remains incurable, and patients may eventually require additional treatment options as the disease progresses and becomes more difficult to treat.
This can cause logistical challenges for older patients, caregivers, and people who live far from specialist cancer centres, including those in rural or remote communities, where long travel times, especially during the winter months, transportation costs and time away from work or family can add significantly to the burden of care.
Managing a long-term disease
It’s a disease that, despite best efforts with available treatments, isn’t always well controlled and can be quite symptomatic. The disease commonly cycles through remission and relapse, requiring ongoing monitoring that can be emotionally stressful. “It’s a very scary diagnosis,” says Elias. “Pain, fatigue, infections, and ongoing medical appointments, all affect independence and quality of life, and hospital visits can mean time away from work, as well as added financial stress for patients and their families.” Dr. Kuruvilla also notes the burden treatment can place on patients. “Many of our myeloma treatments are given weekly and require a visit to the cancer centre or hospital, often over many months or years, which means frequent trips and repeated appointments just to receive each dose,” he says.
Thanks to recent innovations, people with multiple myeloma are living much longer. “When I started, myeloma was a highly lethal cancer with a short survival,” says Dr. Kuruvilla. “That has changed thanks to the impact of modern-day treatment. We now have several different types of therapies that can be very effective.” Thanks to advances in treatment, multiple myeloma is increasingly being managed as a long-term condition, making it more important than ever to provide care that maintains quality of life and supports people in their everyday lives. “Patients want to live well, not just live longer,” says Elias. “Our goal is to treat the disease effectively while preserving patients’ quality of life,” adds Dr. Kuruvilla. For people living with multiple myeloma, care that is more compatible with everyday life, coordinated support from families, healthcare teams and the broader community can make a meaningful difference in navigating this complex disease. WRITTEN BY Tania Amardeil
Dr. Philip Kuruvilla Recently Retired Hematologist
Martine Elias CEO, Myeloma Canada
This article was made possible with support from GSK Canada.