NDP introduce new bill legislating a standard of care for Ontarians living with sickle cell disease

QUEEN’S PARK — MPP Jill Andrew (Toronto-St. Paul’s) and MPP France Gélinas (Nickel Belt), have introduced a new bill – the Improve Access to Health Care Act – that would implement a universal protocol to ensure a high standard of care for people living with sickle cell disease province-wide.

“For far too long, Ontarians living with sickle cell anemia have received varying degrees of care when they rush to the emergency in crisis,” said Andrew. “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’’.

When our loved ones seek help at a physician’s office or a hospital, they deserve timely care that will make things better, not worse. This bill will make that happen, by eliminating unnecessary wait times and ensuring people quickly gain access to quality care.”

“People living with chronic conditions like sickle cell disease often face; bias because of lack of knowledge and inconsistent treatments across different hospitals,” added Gélinas. “This leaves far too many Ontarians living with sickle cell disease stuck in the hospital for up to 10 days after they arrive at the emergency department.”

For 15 years, consecutive Liberal governments had the opportunity to improve health outcomes for people living with sickle cell disease through the Quality Based Protocol. But instead, they shelved this work, leaving Ontarians living with sickle cell twisting in the wind. Even former Liberal MPP Mike Cole's tabled bills on sickle cell went nowhere. The Liberals were in power then and it wasn't a priority.

Since then, the Ford government has only made things worse by cutting health care funding, creating longer ED wait times and exacerbating hallway medicine – a problem that grows even more stark every day of the pandemic.

People deserve a government that makes health care a priority and ensures every Ontarian gets the care they need, when they need it.

The Ontario NDP’s Improve Access to Health Care Act will standardize care across hospitals for Ontarians living with sickle cell disease. 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 by a minimum of $43M.

Quotes

Dr. Madeleine Verhovsek
"Individuals living with sickle cell disease (SCD) experience excruciating episodes of pain due to blocked blood flow deep inside their bones. These episodes - called sickle pain episodes or vaso-occlusive episodes - occur without warning and often require hospital-based pain management and supportive care. When receiving treatment in the Emergency Department, we must ensure that patients' reports of their pain are heard and believed; that they receive rapid physician assessment and IV analgesia; and that they are treated by a team that is knowledgeable about SCD. By implementing provincial standards for ED-based SCD care, we can take this important step to ensure excellent and equitable care for all Ontario patients living with SCD."

Dr. Joel Moody
"Access to efficient, effective, and quality healthcare 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 them. The COVID pandemic has surfaced longstanding challenges people of color with chronic conditions such as Sickle Cell Disease endure with our current healthcare system. The passage of the Improve Access to Healthcare Act is an important first step to address the disproportionate length of stay in the emergency departments, the disproportionate access to timely treatment, and the disproportionate length of stay in the hospital for patients with Sickle Cell Disease. Research shows that clinical practice guidelines within standards of care do make a difference."

Emerald Hayles-Weekes
"As a member of the Sickle Cell Association of Ontario's Adult Support Group for over 7 years, I’ve met and become close friends with several adults that live with the disease and heard their stories of humiliation and pain. Being consistently ignored as they lie on stretchers for hours in extreme pain in emergency units, most times in the hallways of these departments. As a parent who hasn’t experienced that so far with our own son's treatment at SickKids Hospital, to hear these stories, it’s not only heartbreaking and scary.. but it’s unacceptable.

We all know our children don’t stop being our babies the minute they turn 18. As parents we should be able to take comfort in knowing our children, no matter what hospital they attend in Ontario, will continue to be treated well, with dignity and be protected when they are vulnerable in the hospital, even as adults.

The Improve Access to Healthcare Act will ensure this."

Sickle Cell Association of Ontario
"A standardized level of care is finally here!

For decades, individuals living with Sickle Cell Disease have dreaded going to the hospital when in crisis due to the lack of consistent, timely, unbiased treatment, they receive when they arrive at their local emergency department.

Changing this has been one of the main goals the Sickle Cell Association of Ontario has had since our inception back in 1981.

The Improve Access To Healthcare Act will improve the care for patients who end up in the emergency room by utilizing a protocol that ensures sickle cell patients receive the same standard of care, regardless of where they access it in the province.

Ontario sickle cell patients will be able to quickly access treatment, reduce related complications, all while reducing their average hospital stay from 10 days to 3 days.

The Improve Access to Healthcare Act is founded on treatment protocols developed by a team of medical professionals and sickle cell patients, who created these recommendations after over 3 years of research, that once implemented, we know, WILL save lives!

We hope every MPP not only votes in favour of this bill but is an ally in the fight to improve the quality of life for sickle cell patients, their families and the community as a whole."