NEWS RELEASE
ANDREA KHANJIN, MPP FOR BARRIE-INNISFIL
RUDY CUZZETTO, MPP FOR MISSISSAUGA-LAKESHORE
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A Private Member’s Bill co-sponsored by Andrea Khanjin, MPP for Barrie-Innisfil, and Rudy Cuzzetto, MPP for Mississauga-Lakeshore, will proceed to third reading in the Ontario Legislature, as it passed the Standing Committee on Regulations and Private Bills on April 21, 2021.
Bill 255, the Sickle Cell Disease Awareness Day and Thalassemia Awareness Day Act, would, if passed, proclaim June 19 as Sickle Cell Disease Awareness Day, and May 8 as Thalassemia Awareness Day.
“I am so thankful that I had the opportunity to meet with Lanre – Founder of the Sickle Cell Awareness Group of Ontario – when I was first elected, to learn more about how much of an impact this disease causes for so many people in our communities,” said Khanjin. “To raise awareness on how important this issue is, in 2018 I hosted an event at Queens Park where people from across Ontario came to attend; and this Private Member’s Bill is a major step to recognize people that live with these diseases, and the supports that are available to them.”
"I’m so pleased that our colleagues on the Standing Committee on Regulations and Private Bills were willing to work with us to help raise awareness of sickle cell disease and thalassemia in our schools, workplaces, and hospitals across Ontario," said Rudy Cuzzetto, MPP for Mississauga-Lakeshore. "While these are the most common inherited blood disorders in the world, awareness, research, and treatments still lag far behind many other chronic illnesses. Bill 255 represents an important step towards improving the lives of Ontarians living with sickle cell disease or thalassemia, and their families."
"Bill 255 - Sickle Cell Disease Awareness Day and Thalassemia Awareness Day Act, moving to its third reading on April 21st , 2021 represented a step forward for those living with sickle cell and thalassemia diseases, as it will further improve the visibility of these diseases among the policymakers, medical professionals, the pharmaceutical industry, and the general public,” says Lanre Tunji-Ajayi, the President/Chief Executive Officer of Sickle Cell Awareness Group of Ontario. “Individuals with Sickle Cell Disease continue to receive sub-optimal care in Ontario hospitals partly due to care providers’ limited awareness and knowledge of the disease."
“Canada is the first country in the world to enact June 19 as World Sickle Cell Day and Ontario moving forward to ratifying June 19 as the law clearly indicates this province cares about racialized health matters. The sickle cell and the thalassemia disease communities thank the Honorable Andrea Khanjin, the Honorable Rudy Cuzetto, and the distinguished Members of the Legislative Assembly of Ontario for shining the much needed light on sickle cell and thalassemia diseases - the forgotten, yet debilitating, life-shortening health conditions mostly affecting the marginalized Ontario citizens.”
Sickle cell disease and thalassemia are inherited red blood cell disorders. As debilitating genetic diseases, they can cause severe chronic pain, organ dysfunction, bacterial infections, and many other serious complications. The lifespan of individuals with these disorders can be reduced by as much as 30 years.
June 19 is recognized annually as World Sickle Cell Day by organizations such as the World Health Organization, African Union, and the United Nations, including the United Nations Educational, Scientific and Cultural Organization. May 8 is recognized annually as World Thalassemia Day throughout the world and by the Thalassemia International Federation.
“I’m excited to see this bill pass third reading and become law. This will be a huge milestone for many Ontarians living with Sickle Cell and will be step forward to ensuring these patients receive the help they need,” said Khanjin.
Once a date is set for Bill 255 to be debated in the Ontario Legislature for a third reading, members of the public will have an opportunity to observe virtually.
Quick facts:
- Approximately five per cent of the world’s population are healthy carriers of the genes for sickle cell disease, with the percentage as high as 25 per cent in some regions.
- Although Ontario now offers universal newborn screening for these disorders, important gaps remain in our understanding and knowledge about their exact prevalence in our province.
- It is estimated that 3,500 people in the province of Ontario, and 6,000 in Canada, are living with sickle cell disorder. Over 150,000 people in Ontario are also estimated to carry the sickle cell gene.
- It is estimated that there are 1,200 thalassemia patients in Canada, with more than 75 per cent living in Ontario. Toronto is home to the largest centre for thalassemia comprehensive care in North America.
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