New Ontario NDP bill aims to standardize care for people living with sickle cell disease

Cruz Hayles-Weekes is a nine-year-old Scarborough boy who has sickle cell disease. The blood disease can cause severe abdominal and bone pain, as well as joint pain often landing the patient in the emergency room at a moment’s notice.

During a time when Cruz experiences a vaso-occlusive crisis, a painful complication of the disease, the extreme pain in his legs and body lands him in Toronto’s Sick Kids Hospital emergency ward where he gets timely and attentive care. But that’s for now. His mother, Emerald Hayles-Weekes said she worries about his future care as an adult.

That’s because there has been documentation about the racialized experience of sickle cell patients, the condition occurring in people of African, Arab, and Indian racial backgrounds – all pointing to systemic mistreatment and misdiagnosis of patients.

“I see how my friends suffer,” says Hayles-Weekes who has been an advocate for sickle cell patients in Ontario. “And they told me their stories of humiliation and pain consistently being ignored while in extreme pain in emergency units, and many times they’re just left in the hallways of these units.”

“As a parent who has not experienced that so far with my son, it’s not only heartbreaking and scary, but it’s not acceptable. We all know that our kids don’t just magically not be our babies anymore the minute they turn 18.”

Watch below: What is sickle cell disease?

That’s why a new bill being introduced – called the Improve Access to Health Care Act – is such an important piece of legislation.

NDP MPP Jill Andrews, who tabled the bill, says it would help to ensure that standardized protocols are followed province-wide, reducing gaps and inconsistencies in health care being provided, especially in emergency situations.

“The bill will help save lives,” she said. “Shamefully, many with sickle cell are mistreated when they most need help – from being callously and racially profiled as drug-seeking to being subjected to incredibly long wait times, while still in pain.”

Watch below: The racialized experience of sickle cell patients

NDP health critic MPP France Gélinas, the other member of provincial parliament who introduced the bill, says this day has been a long time coming.

“I first became aware of the discrimination and the racism that people living with sickle cell disease, faced over a decade ago,” she said. “We’re planting the seeds for the better quality of care. We are putting the seeds to turn the page on this so that people with sickle cell disease can look at quality care, no matter where they seek help.”

Dr. Joel Moody with the Sickle Cell Association of Ontario, says this bill will also improve care for people who are trying to access treatment, which will reduce related complications and costs to the healthcare system.

“The current pandemic has surfaced long-standing challenges people of colour with chronic conditions, such as sickle cell disease,” he said. “Access to, efficient, effective, and quality health care should be an expectation for all Ontarians. When a group or segment of the population fails to realize that expectation, we as a society have failed.”

There are also calls for the government to start collecting race-based data in Ontario to get a better understanding of patient experiences in the health care system.