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June 19 marks first Sickle Cell Disease Awareness Day

Sickle cell disease and thalassemia are inherited red blood cell disorders
2020-02AndreaKhanjinMK
Barrie-Innisfil MPP Andrea Khanjin is shown in a file photo. Miriam King/Bradford Today

NEWS RELEASE
ANDERA KHANJIN, BARRIE-INNISFIL MPP
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TORONTO — A Private Member’s Bill co-sponsored by Andrea Khanjin, MPP for Barrie-Innisfil, and Rudy Cuzzetto, MPP for Mississauga-Lakeshore, passed its third reading in the Ontario Legislative Assembly on May 20, 2021 and became law on June 3, 2021 after receiving Royal Assent.

Bill 255, the Sickle Cell Disease Awareness Day and Thalassemia Awareness Day Act, proclaims June 19 as Sickle Cell Disease Awareness Day, and May 8 as Thalassemia Awareness Day.

To celebrate the inaugural Sickle Cell Disease Awareness Day this June 19, the Sickle Cell Awareness Group of Ontario (SCAGO) held a World Sickle Cell Day (WSCD) virtual conference to learn SCD advocacy best practices from seasoned global advocates, doctors and experts from Africa, Asia, Europe, the Middle East, North America and South America.

"I'm proud to celebrate the first Sickle Cell Disease Awareness Day in Ontario today, after Bill 255 received Royal Assent earlier this month," said Rudy Cuzzetto, MPP for Mississauga-Lakeshore. "Every year, this day will be an important opportunity to raise awareness of the most common inherited blood disorder in Canada, and the many challenges that patients and their families can face when confronting this disease."

"The recognition of June 19 as Sickle Cell Awareness Day in Ontario is a gigantic victory. This designated day will support our ongoing efforts demonstrating the urgent need for the right care at the right that patients with sickle cell disease need and deserve” said Lanre Tunji-Ajayi, Global SCD Advocate & President/CEO of the Sickle Cell Awareness Group of Ontario. “On behalf of the Ontario sickle cell disease community, we thank you MPP. Khanjin and Cuzetto as well as everyone who contributed to the passing of Bill 255. We wish you all a healthy and safe #SickleCellAwarenessDay."

"Sickle Cell Disease Awareness day marks the 'beginning of a new era' for Ontarians living with sickle cell disease or thalassemia, and their families”, said Andrea Khanjin, MPP for Barrie/Innisfil. “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. This day to raise awareness of these diseases will help advocacy organizations like hers to continue to speak up for people and ensure that they receive the proper healthcare that everyone in Ontario deserves.”

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.

Having provincial Sickle Cell and Thalassemia Awareness Days is essential in efforts to improve healthcare for patients with these disorders as healthcare is managed at the provincial level. With this awareness day in place, future efforts to work with health organizations and experts to bring about positive change for these patients will be more effective.

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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