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living with sickle cell disease means also battling racial discrimination to get care

lanre tunji-ajayi founded the sickle cell awareness group of ontario in memory of her brother who died of the disease at age 29, and to tackle the racism that is hurting patient care.

by sadaf ahsan

mar 2 2022

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5 minute read

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sickle cell disease is also a battle against racial discrimination

"i still get calls from patients at 11 p.m. because they need to talk to somebody, or they're in pain, or they're not getting the right care," says lanre tunji-ajayi. supplied

when lanre tunji-ajayi lost her brother sunday to avoidable and treatable complications of sickle cell disease (scd) in 1999, just days before his 30th birthday, it motivated her to advocate for her community so no other families would have to face a similar, devastating loss.

six years later, in june 2005, alongside her husband timothy, she founded the sickle cell awareness group of ontario (scago) in his memory. the non-profit works to provide support in the form of clinic research, health promotion, and patient education to those living with scd, an inherited and incredibly painful blood disorder that primarily affects racialized populations and can shorten a life by over 30 years.

part of the reason tunji-ajayi was so motivated to create scago was because of the stigma facing those with scd, who often experience racial discrimination as a barrier to quality health care.

‘he was my best friend’

“i was dealing with my own stigma around the disease,” she says, recalling the early years after her brother died. “i grew up in a family where you don’t talk about it at all. but every october, around my brother’s death, there would be this veil of depression that just came upon me. he was my best friend.”

breaking the cycle of racism and bias in healthcare

we were taking in 10 to 12 transfers a day from outside hospitals into st. michael's because the communities they came from were so disproportionately impacted. what we noticed was that most of these families were essential workers. long covid and the physical disabilities that come with getting covid are going to last in these communities for years to come.we also noticed that the number of rehab beds and resources in these communities was very limited compared to neighbouring communities. ripu minhas: our numbers showed that bipoc communities were seven times more likely to be infected by covid. entire racialized communities have really been "othered" for years, for generations, by our system. i would treat patients and speak to families that could be my family, then i would go home and turn on the news.

bipoc communities are seven times more likely to be infected by covid. getty

isn't it time we had data on the health of bipoc in canada?

'we can’t count on a time when the government is going to step in and take care of the communities that it exploits,' says first nation policy researcher.

public health ontario found that covid-19 infection rates were three times higher in areas where there were more people of colour. getty

as a spiritual person, tunji-ajayi says she then felt moved to “do something” by a higher power, to use her grief for good. what began as just the charitable arm of her and her husband’s cosmetics company soon became what she calls “a ministry and a calling.”

“sickle cell groups do not often have funding, it’s difficult,” she says. “help is needed, and if i’m one person that can give time without worrying about pay, then it needs to be done. i still get calls from patients at 11 p.m. because they need to talk to somebody, or they’re in pain, or they’re not getting the right care.”

tunji-ajayi’s 17 years of hard work have paid off. in 2017, thanks to scago’s contributions alongside the advocacy work of the sickle cell disease association of canada , the country recognized june 19 as national sickle cell day , helping to raise visibility.

more recently, the non-profit was awarded $200,000 in funding from the public health agency of canada’s immunization partnership fund to improve vaccine uptake in black communities and scd populations.

it’s a reminder that structural inequalities upheld in the health-care system — like lack of access, lack of race-based data, language barriers, and limited culturally sensitive care — are what contribute to disproportionate numbers of people of colour often being the most at risk of disease and death.

scd, specifically, affects 20-million people worldwide, according to the world health organization, while in canada alone, 6,000 people on average are living with scd. it is the most prevalent in parts of africa, followed by the caribbean, the mediterranean, the middle east, india, and south and central america.

but because it is a disease more common with people of colour, scd patients are often provided a lower quality of care and subject to the aforementioned inequalities. many patients often report not even being believed when they describe their symptoms and ailment, so pervasive is systemic racism.

skin colour is often an unfair disadvantage

in a 2020 new england journal of medicine article , doctors alexandra power-hays and patrick t. mcgann write, “although scd is a global disorder affecting people of all races, in the united states, as a direct result of the transatlantic slave trade, nearly all patients with scd are black. this fact would be mere medical trivia if we did not live in such a highly racialized society. unfortunately, the social construct of race in america requires the majority of patients with scd not only to face the consequences of a serious health condition, but also to navigate a society in which the colour of their skin is often an unfair disadvantage.”

and no, canada is not all that different when it comes to racism in the health-care system. there has been progress, but slow. in 2017, ontario published a clinical handbook for sickle cell crisis, and in 2020, the ndp introduced the improve access to health care act, a bill that would standardize care in hospitals across the province for those living with scd, while also improving treatment access, often a key barrier for racialized patients.

“there’s been some change. is it significant? i don’t think so,” says tunji-ajayi. “i have worked at provincial, national and global levels when it comes to scd and there’s a gap, one that is uniform across the world. in canada, we have diseases like hemophilia and cystic fibrosis that have less patients but better funding trajectories and better recognition. when you talk about scd, people wonder what it is, they ask if it’s ‘a black-people disease.'”

as of 2019, seven provinces and three territories began screening for scd. during some of the processes to establish these protocols, tunji-ajayi recalls several members of the provincial government suggesting racially targeted screening at birth may be the wiser choice.

“i call it discrimination to say you’re only screening black people and not others,” she says. “in achieving universal screening, we’re helping to improve visibility of the disease and improve care and treatment for those who are affected. [and] this is just scratching the surface.”

so what’s next? other than greater funding, visibility and more universal screening practices, power-hays and mcgann are calling for an analysis of the way racism affects accessing funding to begin with, and regular racial implicit bias training for all health-care workers.

tunji-ajayi echoes their goals, and adds that greater mental health support for scd patients also needs to become a priority, as do pain management protocols.

more than anything, she hopes, healthy equity will see a shift, particularly in a post-pandemic era that saw these differences more starkly than ever.

ultimately, she says, “we have to hold health-care providers accountable for the kind and the quality of care we are giving to citizens — no matter their race.”

sadaf ahsan is a toronto-based culture writer, editor and stereotypical middle child. she can be reached here.

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