Swab to Save a Life: The Diversity Problem in Canada’s Blood Supply
By Grace Malheiro, BHSc Candidate, School of Health Studies
Canadian Blood Services, established in 1998, is a not-for-profit organization that plays an essential role in Canada’s health care system. The organization works towards creating the best possible treatment and care for patients by ensuring that Canadians have access to safe and high-quality blood, plasma, stem cells, organs and tissues. Individuals with serious injuries, undergoing surgeries, or battling diseases all rely on these supplies, and the demand is high. In fact, half of all Canadians will need blood or know someone who will need blood at some point in their lives. Also, every 60 seconds a Canadian requires a blood transfusion (Canadian Blood Services). Despite this need, Canadian Blood Services faces challenges in fully reaching their vision: “To help every patient. To match every need. To serve every Canadian.” The lack of donors continues to prevent individuals in need of a blood donation from returning to good health. This is extremely evident for individuals awaiting stem cell transplants. Those who are at the greatest disadvantage of becoming a stem cell recipient are those belonging to ethnically diverse populations (Canadian Blood Services). This is an equity problem. Not everyone has a fair chance of receiving a stem cell transplant. Therefore, not everyone has the same opportunity to live a healthy life.
Stem cells are immature cells that can develop into red blood cells (carry oxygen), white blood cells (fight infections) and platelets (control bleeding). They are found in bone marrow, peripheral blood, and umbilical cord blood and are transplanted into patients whose bone marrow has failed due to an illness. Often patients undergoing chemotherapy or radiation treatment require stem cells.
Over 80 diseases and disorders can be treated with stem cells such as blood cancers (e.g., leukemia, lymphoma, myeloma), bone marrow deficiency diseases (e.g., sickle cell disease), and immune system and metabolic disorders (Canadian Blood Services). Life-threatening consequences can result in the absence of stem cells, and although there are donors available there remains a major barrier- stem cell transplants require the donor and recipient to be a match.
A stem cell match is determined based on DNA markers through a process called Human Leukocyte Antigen (HLA) testing (Lee, 2023). Antigens are on the surface of white blood cells and help the body respond appropriately to any virus or toxins the body comes across (NCI). The closer the antigens are, the more likely the patient will be receptive to the treatment. Furthermore, it is more likely that patients will find a matching donor with those who have the same ethnic ancestry. Therefore, having many ethnically diverse donors is essential.
Ethnically diverse donors are necessary to save lives but this continues to be a problem in Canada. Currently, almost 70% of donors are Caucasian, leaving a small number of ethnically diverse donors. About 6% of donors are Asian, while Arab, Black, Hispanic, and Indigenous groups each only make up approximately 1% of stem cell donors. Other ethnically diverse populations also make up a very small number of donors. This becomes problematic for ethnically diverse individuals waiting for a match to receive a successful stem cell transplant and ultimately can lead to negative outcomes including death.
Historical and current social inequities are some of the reasons why a limited number of ethnically diverse individuals join the stem cell registry. Overall, ethnically diverse populations usage of the healthcare system is low. Although there have been improvements in engagement in the healthcare system, there remains a gap. According to the Canadian Community Healthy Survey, Arab/West Asian women have the lowest rates of use of a regular healthcare provider. In these populations, 7 fewer adults per 100 people go to a consistent healthcare provider (Government of Canada, 2022). Less engagement in the healthcare system is due to several factors including lower language proficiency, beliefs about illness and treatment, and distrust in the healthcare system. Healthcare services must consider each individual and their ethnic differences to enhance the equity of care and to gain greater trust by all people (Chauhan et al., 2020).
Henrietta Lacks’ story demonstrates why certain populations distrust the healthcare system more than others. Lacks’, an African-American woman in the 1950s, was receiving treatment for cervical cancer in Baltimore, Maryland. During her treatment, cells from a tumor biopsy were being cultured in a lab and were used to create the cell line known as HeLa for medical research. Today, her cancer cells continue to be the source of an immortal cell line providing irreplaceable data to the medical field. Yet, Lacks never consented to this process, nor was she or her family compensated for the use of her cells (Nature Publishing Group, 2020). Stories like Lacks’ are a possible reason as to why ethnically diverse populations do not trust the healthcare system and therefore avoid joining the stem cell registry.
Retention of ethnically diverse stem cell donors is an additional problem. Hamed et al. (2022) notes that non-white groups are more likely to opt out of a stem cell donation after having been matched with a patient. Some factors contributing to this result include feelings of uncertainty, family concerns about donating, less knowledge about the donation process, mistrust of stem cell allocation, and religious objections. It is crucial that recruitment strategies aim at improving retention of registry members of ethnically diverse groups.
With more diverse donors, patients will have a greater chance of successfully being matched and hopefully return to good health. Becoming a stem cell donor can sound complex yet it is quite the opposite. Joining the stem cell registry is the first step in helping to save someone’s life. To be eligible, one must be between 17-35 years of age and be in good health. Once you have joined the registry online, you will receive a cheek swab kit in the mail and will be provided with a prepaid envelope to send back to send to Canadian Blood Services. The HLA process will occur, and you will be notified in the months or years to come if a match is found (Canadian Blood Services).
Consider joining the Canadian Blood Services stem cell registry, especially if you are a member of an ethnically diverse population or have a mixed-race background. You could help save someone’s life and make the Canadian Blood Services vision a reality.
More information about joining the stem cell registry can be found here: https://www.blood.ca/en/stemcells/donating-stemcells
References
Canada, P. H. A. of. (2022, August 16). Government of Canada. Racialized adults and inequalities in Canada - Canada.ca. https://www.canada.ca/en/public-health/services/publications/science-research-data/inequalities-health-racialized-adults-18-plus-canada.html
Chauhan, A., Walton, M., Manias, E., Walpola, R. L., Seale, H., Latanik, M., Leone, D., Mears, S., & Harrison, R. (2020). The safety of health care for ethnic minority patients: A systematic review. International Journal for Equity in Health, 19(1). https://doi.org/10.1186/s12939-020-01223-2
Hamed, A. B., Bruce, J. G., Kuniyil, V., Mattila, D., Williams, E. P., Dew, M. A., Myaskovsky, L., Confer, D. L., & Switzer, G. E. (2022). Racial and ethnic differences in attitudes, perceptions, and knowledge about unrelated hematopoietic stem cell donation: A study of younger newly recruited potential donors. Transplantation and Cellular Therapy, 28(6). https://doi.org/10.1016/j.jtct.2022.03.013
Join Canada’s Lifeline - Facts. MyAccount. 2023. https://myaccount.blood.ca/en/term/facts
Lee, S. (2023). Stem cell transplant. Canadian Cancer Society. https://cancer.ca/en/treatments/treatment-types/stem-cell-transplant#:~:text=To%20improve%20the%20chance%20of,and%20recipient%20are%20closely%20matched
Nature Publishing Group. (2020, September 1). Henrietta lacks: Science must right a historical wrong. Nature News. https://www.nature.com/articles/d41586-020-02494-z
NCI Dictionary of Cancer terms. National Cancer Institute. (n.d.). https://www.cancer.gov/publications/dictionaries/cancer-terms/def/antigen
Stem cell donation eligibility and registration. Canadian Blood Services (2023). https://www.blood.ca/en/stemcells/donating-stemcells/stemcell-eligibility-and-registration
Stem Cell FAQs. Stem cell donor and patient FAQs (2023). https://www.blood.ca/en/stemcells/donating-stemcells/stemcell-donor-and-patient-faqs
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