Addressing the Health Equity Gap in Sickle Cell Disease in Ontario
Addressing the health equity gap for individuals with sickle cell disease in Ontario, Canada.
SCAGO
Table of contents
Health equity is about providing people with an equal chance of attaining their fullest health potential, including addressing the social determinants of health such as racism and poverty1.
Sickle Cell Disease is the most common genetically inherited disease in Canada. It is a severe, congenital disorder of the red blood cells, affecting individuals from diverse ethnic backgrounds – Mediterranean, African, Caribbean, Middle East, South America, and South Asia. More than 6000 Canadians and 3500 Ontarians2 are affected, and that number is increasing annually in large part due to migration from countries with high disease prevalence, as well as natural increase within Canada from parents who carry sickle cell disease genetic traits.
Individuals living with sickle cell disease experience chronic fatigue and episodic pain crises. Without proper, ongoing care, these individuals experience major health complications including organ failure, even at a young age. They also have compromised immune systems and are highly susceptible to infection. As such, they are at a higher risk of contracting dangerous communicable illnesses, such as COVID-19, and experiencing poorer outcomes compared to their peers who do not have sickle cell disease.
In Ontario and across the country, sickle cell disease predominantly affects individuals who identify as Black. The persistent health disparities experienced by racialized communities creates significant barriers to health equity for Ontario’s Black community, particularly those individuals with sickle cell disease who depend substantially on access to Ontario’s health and social services.
Improving health outcomes for Ontario residents living with sickle cell disease will not only benefit the patients and their families by decreasing severe disease complications, and the need for hospitalization, but it will also improve their quality of life. It will increase their opportunities to contribute productively to society, while significantly decreasing the burden of costly in-patient care.
Ontarians with sickle cell disease continue to die from largely preventable complications of sickle cell disease. Under the circumstances, it is especially troubling to know that you, your child or family member with sickle cell disease may:
Be stigmatized in Emergency Departments, frequently labeled as “drug-seeking”, delayed and/or denied access to effective pain medications when presenting for medical treatment for pain crises;
Have a life expectancy that is significantly reduced by about 25 to 30 years compared to other Ontarians without sickle cell disease;
Have children born with sickle cell disease genetic traits, and not be aware that they too are at risk of having affected children of their own;
Depending on the hospital of admission across the province, receive sub-optimal care and treatment resulting in preventable complications and possibly premature death;
Not have access to comprehensive care, including lifesaving treatments, drugs and knowledgeable care providers; and
Often have quality of life that is lower than other Ontarians without sickle cell disease.
Mismanagement of sickle cell disease does not only impact the individuals and their families, but the healthcare system as a whole.
Multiple studies have shown that patients with sickle cell disease rely heavily on acute care medical services such as emergency room visits and inpatient hospitalization3-11. Inpatient hospitalizations are particularly expensive.
According to Mrs. Lanre Tunji-Ajayi, the president/CEO of the Sickle Cell Awareness Group of Ontario, one week of acute care (non-ICU) admission of an individual with sickle cell disease in an Ontario hospital costs the provincial government an average of $20,000 and many individuals with sickle cell disease are admitted at an average of 6-12 times annually.
The length of hospitalization may range from one to several weeks of admission/year. Using conservative figures, non-ICU admission 6 times/year, lasting one week per admission, may cost upwards of $120,000 per patient/year and upwards of $9 million for a patient’s lifetime; and this figure excludes the societal costs of unemployment and decreased work productivity. As the number of patients with sickle cell disease in Ontario continues to grow, the associated burden on the medical system is becoming considerable.
However, the good news is that there is an enormous opportunity to decrease the health care costs of patients with sickle cell disease while simultaneously improving clinical outcomes. Shifting the care of patients with sickle cell disease from an inpatient to outpatient setting, primarily through the provision of basic preventative health maintenance and the use of hydroxyurea, can reduce total healthcare costs by 20%.12
Bridging the Health Equity Gap for Sickle Cell Disease in Ontario
Given the provincial government’s responsibility in ensuring equitable access to health by all of its citizens, we implore the Ministry of Health and the newly created Ontario Health to work with the Sickle Cell Awareness Group of Ontario (SCAGO) in ensuring that, (similar to Hemophilia Ontario), individuals with sickle cell disease receive appropriate and timely intervention that:
reduces preventable complications, stigma and discrimination in Ontario hospitals
improves their physical and mental well-being.
Conclusion
Bridging the Health Equity Gap for Sickle Cell Disease in Ontario
Given the provincial government’s responsibility in ensuring equitable access to health by all of its citizens, we implore the Ministry of Health and the newly created Ontario Health to work with the Sickle Cell Awareness Group of Ontario (SCAGO) in ensuring that, (similar to Hemophilia Ontario), individuals with sickle cell disease receive appropriate and timely intervention that:
reduces preventable complications, stigma and discrimination in Ontario hospitals
improves their physical and mental well-being.
Health Equity and the Social Determinants of Health: A Role for the Medical Profession, Canadian Medical Association, 2013, policybase.cma.ca/en/viewer?file=%2Fdocuments%2FPolicyPDF%2FPD13-03.pdf#search=&phrase=false.
Kim, E., Graves, E., Tunji-Ajayi, L. & Pendergrast, J. (2018). How Many Sickle Cell Disease Patients Are There in Ontario? Results of a Query of Health Services Administrative Databases. Retrieved from: https://sicklecellanemia.ca/how-many-sickle-cell-disease-patients-are-there-in-ontario
Yusuf HR, Atrash HK, Grosse SD, Parker CS, Grant AM. Emergency department visits made by patients with sickle cell disease: a descriptive study, 1999-2007. Am J Prev Med. 2010; 38:S536–541
Mvundura M, Amendah D, Kavanagh PL, Sprinz PG, Grosse SD. Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States. Pediatr Blood Cancer. 2009; 53:642–646
Amendah DD, Mvundura M, Kavanagh PL, Sprinz PG, Grosse SD. Sickle cell disease-related pediatric medical expenditures in the U.S. Am J Prev Med. 2010; 38:S550–556
Raphael JL, Mei M, Mueller BU, Giordano T. High resource hospitalizations among children with vaso-occlusive crises in sickle cell disease. Pediatr Blood Cancer. 2012; 58:584–590
Raphael JL, Dietrich CL, Whitmire D, Mahoney DH, Mueller BU, Giardino AP. Healthcare utilization and expenditures for low-income children with sickle cell disease. Pediatr Blood Cancer. 2009; 52:263–267
Wolfson JA, Schrager SM, Coates TD, Kipke MD. Sickle-cell disease in California: a population-based description of emergency department utilization. Pediatr Blood Cancer. 2011; 56:413–419.
Frei-Jones MJ, Baxter AL, Rogers ZR, Buchanan GR. Vaso-occlusive episodes in older children with sickle cell disease: emergency department management and pain assessment. J Pediatr. 2008; 152:281–285
Bundy DG, Strouse JJ, Casella JF, Miller MR. Burden of Influenza-Related Hospitalizations Among Children with Sickle Cell Disease. Pediatrics. 2010; 125:234–24
Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute care utilization and rehospitalizations for sickle cell disease. JAMA. 2010; 303:1288–1294
Boulet SL, Yanni EA, Creary MS, Olney RS. Health status and healthcare use in a national sample of children with sickle cell disease. Am J Prev Med. 2010; 38:S528–535
Wang WC, Oyeku SO, Luo Z, Boulet SL, Miller ST, Casella JF, Fish B, Thompson BW, Grosse SD; BABY HUG Investigators. “Hydroxyurea is associated with lower costs of care of young children with sickle cell anemia.” Pediatrics. 2013;132:677-83
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