Sickle cell bill gives hope to sufferers, caregivers: Senator Ince
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Stark testimony from sufferers of sickle cell disease brought home the significance of a Senate bill that would improve the lives of people with this debilitating disease, as well as their caregivers.
“Bill S-201 represents hope,” Ade Ekhator, who lives with the disease, told senators and other dignitaries at a June 19, 2026 event at the Senate of Canada Building.
Soon-to-be doctor Ade Ekhator, who has sickle cell disease, urged parliamentarians to pass Bill S-201 “because every Canadian deserves the chance not merely to survive, but to thrive.” (Photo credit: Sickle Cell Disease Association of Canada)
“Hope that future generations will experience fewer barriers. Hope that healthcare providers across Canada will have the knowledge and resources they need. Hope that people living with sickle cell disease will no longer feel invisible within our health-care system.”
Ms. Ekhator was speaking about Bill S-201, the National Framework on Sickle Cell Disease Act, at an event called “Closing the Survival Gap: Equity in Sickle Cell Disease.” The event brought together parliamentarians, academics, researchers, advocates, medical professionals, individuals living with sickle cell disease, and their families.
I hosted the event in collaboration with the Sickle Cell Disease Association of Canada and the University of Ottawa’s Interdisciplinary Centre for Black Health.
The bill, introduced by former senator Marie-Françoise Mégie, is meant to improve awareness, screening, treatment and support for the approximately 6,000 people living with sickle cell disease across Canada.
As the sponsor of the bill in the Senate, I wanted parliamentarians to meet some of the people affected by sickle cell disease, a chronic genetic illness where misshapen red blood cells impede blood flow and cause agonizing pain and organ damage.
Ms. Ekhator is fortunate. She has sickle cell disease, but her symptoms are generally mild. Still, she spoke of a childhood filled with sudden pain attacks, sleepless nights and hospital visits.
“For the first seven years of my life, sickle cell disease shaped almost everything my family did,” she said.
“As an only child, I know my illness placed an enormous burden on my parents. They lived with constant uncertainty. They never knew when the next crisis would come, how severe it would be, or whether I would need to be hospitalized.”
The toll the disease takes on caregivers is why the bill contains provisions to study the implementation of a caregiver tax credit and to set standards for the diagnosis and treatment of sickle cell disease.
Ruth Kingner described long trips to Halifax to access medical treatment for her 10-year-old daughter, who cannot get the care she needs in their hometown of Saint John, New Brunswick. (Photo credit: Sickle Cell Disease Association of Canada)
Ruth Kingner, a single mother whose youngest daughter has the disease, spoke about the regular trips from her Saint John, New Brunswick home to Halifax clinics because there is no appropriate treatment facility in her hometown.
“It means hours on the road. Hours of planning. Hours of worry,” she said. “As a mother, there is a special kind of fear that comes when you are driving long distances with a child who has a chronic illness.”
“Comprehensive care should not depend on a postal code.”
Bill S-201 was adopted by the Senate in November 2025. It is now in the House of Commons, where it has been referred to the health committee for study.
Everyone in the room felt the importance of getting this bill to the finish line.
I applaud the bravery and resilience of Ms. Ekhator — soon to be a doctor — and Ms. Kingner, a self-described “warrior mom.”
They have gone to extraordinary lengths to try to live ordinary lives. They deserve more support than the system can give them.
I am grateful to them for sharing their experiences with us. My hope is that the stories we tell lead to actions that will improve the diagnosis, treatment and quality of life of people living with sickle cell disease.
Senator Tony Ince is a lifelong advocate for social justice, equity and diversity, particularly within African Nova Scotian communities. He represents Nova Scotia in the Senate.
Stark testimony from sufferers of sickle cell disease brought home the significance of a Senate bill that would improve the lives of people with this debilitating disease, as well as their caregivers.
“Bill S-201 represents hope,” Ade Ekhator, who lives with the disease, told senators and other dignitaries at a June 19, 2026 event at the Senate of Canada Building.
Soon-to-be doctor Ade Ekhator, who has sickle cell disease, urged parliamentarians to pass Bill S-201 “because every Canadian deserves the chance not merely to survive, but to thrive.” (Photo credit: Sickle Cell Disease Association of Canada)
“Hope that future generations will experience fewer barriers. Hope that healthcare providers across Canada will have the knowledge and resources they need. Hope that people living with sickle cell disease will no longer feel invisible within our health-care system.”
Ms. Ekhator was speaking about Bill S-201, the National Framework on Sickle Cell Disease Act, at an event called “Closing the Survival Gap: Equity in Sickle Cell Disease.” The event brought together parliamentarians, academics, researchers, advocates, medical professionals, individuals living with sickle cell disease, and their families.
I hosted the event in collaboration with the Sickle Cell Disease Association of Canada and the University of Ottawa’s Interdisciplinary Centre for Black Health.
The bill, introduced by former senator Marie-Françoise Mégie, is meant to improve awareness, screening, treatment and support for the approximately 6,000 people living with sickle cell disease across Canada.
As the sponsor of the bill in the Senate, I wanted parliamentarians to meet some of the people affected by sickle cell disease, a chronic genetic illness where misshapen red blood cells impede blood flow and cause agonizing pain and organ damage.
Ms. Ekhator is fortunate. She has sickle cell disease, but her symptoms are generally mild. Still, she spoke of a childhood filled with sudden pain attacks, sleepless nights and hospital visits.
“For the first seven years of my life, sickle cell disease shaped almost everything my family did,” she said.
“As an only child, I know my illness placed an enormous burden on my parents. They lived with constant uncertainty. They never knew when the next crisis would come, how severe it would be, or whether I would need to be hospitalized.”
The toll the disease takes on caregivers is why the bill contains provisions to study the implementation of a caregiver tax credit and to set standards for the diagnosis and treatment of sickle cell disease.
Ruth Kingner described long trips to Halifax to access medical treatment for her 10-year-old daughter, who cannot get the care she needs in their hometown of Saint John, New Brunswick. (Photo credit: Sickle Cell Disease Association of Canada)
Ruth Kingner, a single mother whose youngest daughter has the disease, spoke about the regular trips from her Saint John, New Brunswick home to Halifax clinics because there is no appropriate treatment facility in her hometown.
“It means hours on the road. Hours of planning. Hours of worry,” she said. “As a mother, there is a special kind of fear that comes when you are driving long distances with a child who has a chronic illness.”
“Comprehensive care should not depend on a postal code.”
Bill S-201 was adopted by the Senate in November 2025. It is now in the House of Commons, where it has been referred to the health committee for study.
Everyone in the room felt the importance of getting this bill to the finish line.
I applaud the bravery and resilience of Ms. Ekhator — soon to be a doctor — and Ms. Kingner, a self-described “warrior mom.”
They have gone to extraordinary lengths to try to live ordinary lives. They deserve more support than the system can give them.
I am grateful to them for sharing their experiences with us. My hope is that the stories we tell lead to actions that will improve the diagnosis, treatment and quality of life of people living with sickle cell disease.
Senator Tony Ince is a lifelong advocate for social justice, equity and diversity, particularly within African Nova Scotian communities. He represents Nova Scotia in the Senate.