opinion: we can, and must, do better to address the inequities faced by canadians living with sickle cell disease

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racism adds another burden to the lives of people with sickle cell disease, says biba tinga, a caregiver and the president and executive director of the sickle cell disease association of canada/association d’anémie falciforme du canada.

by biba tinga

published nov 22, 2022

last updated feb 21, 2025

4 minute read

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4 minute read

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people living with scd also face racism in health care

biba tinga's experience with sickle cell disease began in 1988 when her son ismaël was diagnosed at just seven months old. supplied

my family’s journey with sickle cell disease (scd) began in 1988 when my eldest son, ismaël, was just seven months old. after developing a fever and receiving treatment for malaria without showing any signs of improvement, he was diagnosed with scd. we were terrified of what this would mean for his future.

in the months that followed, ismaël received more than five blood transfusions and it became clear that due to his scd, he would need many more throughout his life. scd also impacted his growth and, when he was 16 years old, he had a three-year growth delay compared to others his age. he was also in constant pain and had chronic fatigue due to his condition.

unfortunately for those living with scd, the experience is often similar. unless you or someone you know is living with scd, many people have never even heard of this invisible disease. yet it is the most common human genetic disease in the world and affects more than 6,000 canadians. in fact, the world health organization and the united nations have designated it a major global health problem and priority, with an estimated 300,000 babies born with scd each year globally.

up to one in 2,500 babies will have sickle cell disease

so, what exactly is scd? it’s an inherited blood disorder that primarily affects people whose ancestors are from sub-saharan africa, but also people of hispanic, southeast asian, south european (mediterranean), and middle eastern descent. it impacts hemoglobin, a protein carried by red blood cells that supplies oxygen to tissues and organs throughout the body. a child needs to inherit two sickle cell trait genes — one from each parent — to have the disease. infants may be screened before they leave the hospital, otherwise, it is diagnosed when a blood test shows abnormal hemoglobin. the age in which signs and symptoms can begin varies, but dangerous complications can develop rapidly between the ages of six months and five years. in canada, up to one in every 2,500 babies will be born with scd.

the disease and its potentially life-threatening complications — including stroke and irreversible organ damage — are associated with a life expectancy that is reduced by 20 to 30 years. many people also experience what is called a “sickle cell crisis,” which is a painful episode that can affect many areas, including the belly, back, feet or chest, and can last for hours or days at a time. despite the painful symptoms that many individuals living with scd face throughout their lifetime, there is little awareness about the disease. but the fact is, due to its symptoms and those who it impacts, many canadians living with scd often face misconceptions and barriers, including racism and health-care equity issues.

the recent multinational sickle cell health awareness, perspectives and experiences (shape) survey commissioned by global blood therapeutics, a wholly-owned subsidiary of pfizer, uncovered that people living with scd are more likely to report negative experiences with emergency room health-care providers, including not being believed about a symptom and being treated as a drug seeker. additionally, the majority of respondents believe that scd is not seen to be as important as other conditions in society and over one-third say they believe they have received poor treatment because of their ethnicity or socioeconomic background.

these results paint a troubling picture of the added burden people living with scd face. they also highlight the amount of work that needs to be done to reduce stigmas and address the glaring inequities this community is challenged with. but they also help us see the importance of raising awareness of this devastating disease and the urgent need to push for new policies that can improve the lives of canadians impacted by scd.

as a mother and caregiver to a now adult son living with scd, as well as in my role as president of the sickle cell disease association of canada (scdac), i can unfortunately confirm that these results are the sad reality we live with. as ismaël got older and survived one crisis after another, it was clear to me that there are critical gaps in care and treatment for people living with scd that need to be addressed.

this is why i work tirelessly with the scd community to ensure canadians impacted by debilitating symptoms get the care and support they need and deserve. but we can’t do it alone. for us, hope comes in the form of increased education about scd among physicians and other allies, such as researchers and industry partners. it comes from experts and specialists and those directly impacted by the disease using their experience and voices to raise awareness and spark real change. and it comes from research and new treatment options on the horizon that will hopefully make a tangible, life-long difference to help those with scd live their lives to the fullest.

i encourage all canadians to learn more about scd and how you can support our community. let’s work together to shape healthier futures, for everyone.

biba tinga is a caregiver and the president and executive director of the sickle cell disease association of canada/association d’anémie falciforme du canada (scdac/aafc). she also served on the steering committee for the shape survey.

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