leukemia in canada: stats, impact and resources
11 minute read
when we look at our aging and growing population in canada, most cancers, including leukemia, are expected to contribute further to mortality rates and tax the healthcare system.
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it’s not the most common cancer, but the cause of this blood disease isn’t understood. it strikes all ages and can happen to anyone. consider that over two in five canadians have a lifetime probability of developing cancer—and one in every four of us will die from some form of it, statistics confirm.
the basic physiology of leukemia is that your blood has three types of cells: red blood cells that deliver oxygen, platelets that help with blood clotting, and white blood cells that fight infection. your bone marrow makes billions of new blood cells every day, and most of them are red blood cells. but with the onset of leukemia, your body produces more white blood cells than you need. these extra white blood cells don’t mature and function properly and crowd out the red blood cells and platelets, so you can be prone to a host of symptoms like weakness and fatigue, unusual bruising and bleeding, infections and even pain in your bones or joints.
the type of leukemia you have depends on how fast it develops and gets worse and which type of blood cell is involved. testing determines the type and staging of leukemia, including blood tests, bone marrow biopsy or spinal tap (to see if leukemia has spread to the spinal fluid surrounding your brain and spinal cord), and imaging to tell if leukemia has affected your organs, bones or tissue. there are several forms (and subtypes) which can be characterized as acute and chronic.
“there’s really a lot of precision to add to the term leukemia because you can have a chronic lymphocytic leukemia, which is an indolent disease that sometimes we don’t even need to treat. and when we do treat it, people can be on the treatment for years,” says dr. marc-étienne beaudet, an expert in blood cancer at hotel dieu hospital of levis, quebec, near quebec city. his focus is research and treatment of acute myeloid leukemia, or aml, the most common type of leukemia in adults.
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“on the other side of the spectrum, you have acute lymphoblastic leukemia (all) that usually happens in young patients and children. this leukemia is very aggressive, and patients need a lot of chemotherapy, a lot of treatment. usually, they’re cured with their therapy,” he says. “so, for the patient, it’s very hard to navigate through this information because there’s a lot of scientific language and nuance to add to the diagnosis.”
while leukemia is complex and doesn’t form a tumour that can be more easily found and targeted, beaudet says he’s seen incredible progress in effective drug therapies that continue to evolve. the incidence of leukemia in canada is stable, but because of medical advances, more people are living with it.
“some people, especially with the chronic leukemia, live long, full lives. so now we see more patients because they live longer, and because they’re treated over a long period of time, we see them in the clinic much more than my older colleagues did.”
leukemia stats in canada
where are we at in 2024? estimates suggest that about 6,600 canadians will be diagnosed with leukemia, and 3,200 will die from the disease, according to the canadian cancer society. breaking it down further by sex, 4,000 men will be diagnosed, and 1,850 will die from it; 2,700 women will be diagnosed, and 1,350 will die from it.
in chronic leukemia, the lifelong disease, the most recent incidence statistics for chronic lymphocytic leukemia (cll) are from 2019: 1,700 canadians were diagnosed with cll; of those, 1,095 were men and 605 were women. the mean age at diagnosis is 71 years, and, in most patients, cll is initially managed with a “watchful waiting” approach. treatment is required after a median time of 4.8 years of surveillance and leads to lengthy survival because of the recent availability of highly effective therapies, current oncology reports. targeted therapy drugs are now used to target specific cellular functions in cancer’s growth, survival and spread.
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leukemia is the most commonly diagnosed cancer in children and teens in canada, and it’s often thought of as a children’s disease. most childhood leukemias are acute lymphocytic leukemia (all). most of the remaining cases in children are acute myeloid leukemia (aml). chronic leukemias, though, are rare in children.
in 2009, the public health agency of canada launched a pan-canadian childhood cancer surveillance system that actively follows children diagnosed before age 15 and treated at one of the 17 pediatric oncology centres across the country. the childhood cancer surveillance system’s 2017 report found that among one to four-year-olds, leukemias accounted for 41.7 per cent of all diagnoses, while among five to nine-year-olds and 10 to 14-year-olds, lymphomas and bone, tumours became increasingly common.
most cases of leukemia develop in adults. the average age of diagnosis of acute leukemia is around 70, the mayo clinic reports. by that point, it can be harder to go through treatment because people can have a comorbid disease like diabetes or heart disease that compromises their immune system. when we look at our aging and growing population in canada, most cancers, including leukemia, are expected to contribute further to mortality rates and tax the healthcare system.
in canada, as the canadian cancer society notes, the five-year survival rate for all is 51 per cent, which means that half of those diagnosed with all will survive for at least five years. with current treatments, about 80 to 90 per cent of people with all will reach a complete remission (which means that leukemia cells cannot be seen in the bone marrow). about half of these people will relapse and face further treatment.
about 40 to 50 per cent of people with all reach a complete remission and do not relapse. the rates vary with the particular subtype and other health factors.
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the five-year survival rate for all types of leukemia is 67 per cent, says the national cancer institute, and death rates have fallen by almost two per cent every year since 2009.
for leukemia in children aged 0 to 14, the most recent incidence numbers are from 2019, according to the canadian cancer society:
- 250 canadian children were diagnosed with leukemia
- 205 canadian children were diagnosed with all
- 30 canadian children were diagnosed with aml
the most recent mortality statistics for leukemia in children aged 0 to 14 years are from 2022:
- 21 canadian children died from leukemia
- 10 canadian children died from all
- 3 canadian children died from aml
the five-year observed survival for all in children 0 to 14 years of age is 94 per cent, which means that on average, 94 per cent of children diagnosed with all are expected to be alive five years after their diagnosis.
“in 1960, the survival was zero. there was no treatment. children lived for a month or two after diagnosis and died,” dr. paul grundy, pediatric hematology oncologist in edmonton, told cbc news in 2017 in an article about the improved survival rates from childhood leukemia. “in all of medicine, i think this is one of the top success stories: in just 50 years, to go from zero to 90 per cent survival.”
as the lancet reports, leukemia survival has been reported as higher in girls than in boys, both in europe from 1970 up to the 1990s and still recently in canada and the u.s., but the “why” isn’t understood. some research suggests that sex-specific hormones like estrogen protect cancer cells, including leukemia cells. a recent study by the broad institute of harvard and mit found that genetic differences between males and females, including differences in chromosomes and the number of genes susceptible to cancer-causing cells, could explain some of the imbalance.
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for both types of acute leukemia, aml and all, five-year relative survival rates from 2006 to 2008 were highest among people diagnosed at ages 15 to 44 (61 per cent to 64 per cent) and declined sharply with advancing age, statistics canada notes. from its statistics released in 2020, the same age group at diagnosis of aml fared best at 62 per cent five-year net survival rate, again declining significantly with age.
as the canadian cancer society points out, with all, younger adults, usually those younger than 50, have a more favourable prognosis than older adults. this may be because chromosomal abnormalities can happen as a person gets older. older people may also have other health conditions that make it difficult for them to cope with the side effects of treatments for all.
beaudet says there’s a solution for older patients with aml who are not fit for the intensive care of being hospitalized for two months for chemotherapy. “sometimes older patients, usually 70 years or older, they need a less intensive treatment. and that’s where some progress has been made recently. we have access to medication that can be administered in the outpatient clinic, where patients can be surrounded by family.”
new drug therapies target the genetic changes that are thought to drive some forms of aml. recently, menin inhibitors have been developed that work differently from other targeted therapies for aml, says the national cancer institute. instead of blocking the activity of dysfunctional proteins, menin inhibitors block the gene mutations from happening in the first place. in an early-phase clinical trial called augment-101, treatment with the menin inhibitor revumenib caused about one-third of study participants’ cancers to disappear completely, known as complete remission. all participants had previously received many other treatments, including, in some cases, a stem cell transplant.
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impact of leukemia on canadian society
healthcare services in canada are already stretched and expected to become even more taxed with population growth and aging. what does this mean for leukemia? experts like beaudet are buoyed by evolving medications, research on menin inhibitors, and the work spearheaded by the segal cancer centre at the jewish general hospital lady davis institute in montreal, an international training centre for clinical trials for oncology research fellows who specialize in targeted therapies and immunotherapy.
at segal, for example, dr. raquel aloyz is using malignant cells donated by patients treated at the hematology clinic to form a cell bank to develop targeted therapies to treat chronic lymphocytic leukemia (cll), the most common incurable form of leukemia in adults. she’s testing tyrosine kinase inhibitors that identify and attack specific types of cancer cells while causing less damage to normal cells (as opposed to the toxicity of chemotherapy that destroys normal cells and tissue.) funds from the canadian institutes of health research and the leukemia and lymphoma society of america support her work to find the most effective combination of drugs that destroy cll cells in patients resistant to available treatments.
these advancements are important not only for patient welfare but also for economics. a collaborative canadian study, published in current oncology in 2021, looked at the economic burden of continuous oral targeted therapy for cll in canada. researchers considered the previous standard of care for cll before 2015, chemoimmunotherapy, to the current oral targeted therapy from 2020 onward. a study model included four health states: watchful waiting, first-line treatment, relapse and death. costs of therapy, follow-up and monitoring, and adverse events were included.
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as incidence and survival rates are increasing, the prevalence of cll in canada is projected to increase 1.8-fold, from 8,301 patients in 2011 to 14,654 by 2025. the corresponding total annual costs of cll management are predicted to increase 15.7-fold, from $60.8 million to $957.5 million during that same period.
although oral targeted therapy improves survival for patients with cll, it comes at a price because of the projected vast increase in costs from 2011 to 2025, the authors note. “changes in clinical strategies, such as implementation of a fixed oral targeted therapy treatment duration, could help alleviate financial burden.”
another game-changing treatment for all is car t-cell therapy, where a patient’s t-cells are taken from their blood, re-engineered in a lab to target cancerous b-cells, and then infused back into the patient. dr. natasha kekre, a hematologist and scientist at the ottawa hospital and an associate professor at the university of ottawa, is setting up a network to make car t-cells in canada called canadian-led immunotherapies in cancer. the aim is to build a manufacturing platform in a public healthcare setting, making this life-saving treatment available to patients, healthcare professionals and researchers. reshoring drug manufacturing can help manage the supply chain, employ canadians and ultimately lower medication costs.
and we have to recognize that while cancer’s physical and emotional toll is significant, the financial impact of treatment is enormous. the publicly funded healthcare system covers cancer treatment in canada, but most patients incur numerous out-of-pocket expenses. cancer drugs are costly, with private insurance covering some costs for patients with that insurance. acute leukemia treatment often means hospitalization for diagnostics, chemotherapy, radiation, some targeted or immunotherapies, or surgery. while the healthcare system generally covers hospitalization, there can be added expenses like parking fees or fees for private rooms. there’s also transportation to and from appointments, home care services, and lost income from time off work. patients and their families face unexpected financial stress.
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the long-term effects of surviving leukemia include health anxiety, fatigue and brain fog. for children who survive any type of childhood cancer, a recent canadian study found that by age 45, 80 per cent will face severe or life-threatening effects stemming from their cancer treatments. these could be heart disease, colorectal cancer, or breast cancer in women.
“i think people believe that you treat a child with cancer, you cure them, and then it’s fantastic and that we move on,” dr. paul nathan, co-author of the study and an oncologist in the division of hematology and oncology at sickkids in toronto, told global news. “but the problem is we cure them with pretty heavy chemotherapy or radiation or surgery or transplants, often a combination that has long-term problems as a consequence.”
resources and support for leukemia in canada
the leading associations representing leukemia are:
finding support for leukemia can help patients and their families understand the disease and the specifics of their diagnosis, navigate care, access transportation and other services, and find a sense of community through peer groups and counselling programs.
having that support makes all the difference, as beaudet says: “we see it in the clinic. usually, people who are isolated tend to do worse with their treatment because when there are side effects, they don’t have help to get to the hospital, or they don’t get help to manage the medication or to go to the grocery or to help them cook something nice to continue eating.”
he also sees the tremendous value of family caregivers, not only for the physical challenges of leukemia but for mental health. “for the psychological part of it, it’s always a motivation to fight back when you have family with you.”
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