sickle cell disease in canada: stats, impact and resources
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sickle cell disease is an inherited group of blood disorders that causes red blood cells to become misshapen.
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roughly 6,000 canadians live with sickle cell disease, also known as sickle cell anemia. it’s a hereditary group of disorders that affects a protein in the blood that carries oxygen in red blood cells, known as hemoglobin. the red blood cells in a person with sickle cell disease are not shaped as they should be, in the form of a disc, but rather are sickle or crescent-shaped, making it harder for them to bend, move, or facilitate proper blood flow.
when a person has sickle cell disease, they often experience various symptoms, including anemia, swelling in the extremities, frequent infections, and pain crises, which are episodes of significant pain caused by blocked blood flow. these pain crises often need immediate treatment.
the disease is chronic, meaning it requires ongoing management for the duration of one’s life, and in some cases, increases the risk of serious complications that can be life-threatening, including stroke, lung problems, infections and kidney disease.
sickle cell disease stats in canada
in canada, roughly one in every 2,500 newborns will have sickle cell disease, according to the sickle cell disease association of canada, with an estimated 6,000 currently living with the disease.
sickle cell disease disproportionately affects people who are black, with roughly 90 per cent of cases found in this demographic, according to u.s. data, with those of hispanic or latino descent making up roughly three to nine per cent of the remaining cases. the disease primarily develops in people from non-caucasian backgrounds, such as caribbean, middle eastern, south american and south asian individuals.
the exact number of canadians affected by sickle cell in these groups is not readily available.
when looking at data from ontario, sickle cell disease affects females at a rate of 55.9 per cent, and over half of the documented 6,000 cases of sickle cell disease, roughly 3,418, in the country are found in ontario.
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the average life expectancy for individuals with sickle cell disease has improved dramatically over the years, thanks to the introduction of new treatments and management therapies. today, people living with sickle cell disease have an average life expectancy into their mid-50s.
impact of sickle cell disease on canadian society
sickle cell disease can have a high cost on canadian society, as management and care are necessary for all people living with the disease. according to the sickle cell disease association of canada, the healthcare costs for individuals with the disease between ages 16 and 20 make up the top one per cent of the population, with treatment being in the top two per cent of costs.
hospitalizations are at the top of the list when it comes to the most impactful cost-wise, with one week of acute care costing an average of $20,000. for example, if one person with sickle cell disease requires seven hospitalizations per year, which is in the average range of six to 12 times per year, that total cost will be roughly $140,000. over a lifetime, the estimated costs are $9.1 million.
proper treatments and comprehensive care can offset these costs by improving clinical outcomes and quality of life for people living with sickle cell disease.
these figures do not account for other costs that fall on the shoulders of people with sickle cell disease, such as unemployment, job loss or reduced ability to work, as well as medication costs. people with sickle cell disease will miss an average of 9.8 hours per week of work. they also experience productivity losses at a rate of 53.4 per cent.
many people with sickle cell disease also report that they do not have the money to cover medications and other costs associated with their disease, with monthly estimates to care for the disease sitting at $270 to $1,100.
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resources and support for sickle cell disease
since sickle cell disease is considered rare, the availability of resources in canada is not as plentiful as for other diseases. the sickle cell disease association of canada is the primary resource, offering a range of patient support, advocacy and educational services.
they also raise public awareness to promote more research in the field of sickle cell disease, help with the development and implementation of care guidelines, accredit care centres to make finding treatment more accessible, and promote newborn screening.
some provincial partners work with the sickle cell disease association to help patients, including:
other resources that focus heavily on research include the red blood cell disorders program at the university health network (uhn) and the canadian blood services.
each resource organization is designed to help patients directly or provide advancement in research and treatment to improve the quality of life for people living with sickle cell disease.
living with sickle cell disease can be challenging, but with advancements and research continuing to change how people manage the disease, people born today with sickle cell disease may experience better therapies, overall improved quality of life, and a longer life expectancy.
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