TORONTO — A Private Member’s Bill co-sponsored by Andrea Khanjin, MPP for BarrieInnisfil, 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.
“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.”
“The unanimous support for Bill 255 at Third Reading reflects the strong desire of all Ontarians for a better and more compassionate health care system for everyone,” said
Rudy Cuzzetto, MPP for Mississauga-Lakeshore. “Mary Alfano, a mother of twins living with thalassemia in Mississauga, put it best; this bill marks the ‘beginning of a new era’ for Ontarians living with sickle cell disease or thalassemia, and their families. But we also recognize that it’s only the beginning, and much remains to be done. We must all work together to raise awareness of these blood disorders in our hospitals, schools, and workplaces across Ontario.”
“Raising awareness of sickle cell disease and thalassemia is one of the ways our government can help ensure a connected, patient-centred health care system,” says Christine Elliot, Deputy Premier and Minister of Health. “Thank you to everyone who has supported Bill 255 to raise awareness about these conditions and help to ensure patients and families understand the services and supports available to them.”
“Sickle Cell Awareness Group of Ontario (SCAGO) celebrates the proclamation of June 19th as Sickle Cell Disease Awareness Day in Ontario, and appreciates the leadership of MPP Rudy Cuzzetto and MPP Andrea Khanjin in bringing this important bill forward.
Today is a landmark moment for thousands of individuals in Ontario living with this complex, life-altering condition and their families, most of whom belong to Ontario’s Black and South Asian communities. By creating much-needed awareness of Sickle Cell Disease, we can reduce stigma, remove barriers to equitable care, and bring attention to the important need of life-saving comprehensive care for patients across Ontario.”
“The thalassemia community is absolutely delighted for the historic recognition for awareness on thalassemia and sickle cell disease in Ontario. Thalassemia and sickle cell anemia are inherited complex chronic conditions that require a coordinated provision of broad range of services and multidisciplinary long-term health maintenance. We, the Thalassemia Foundation of Canada, believe that this increased awareness is a significant first step that will enhance prevention of new incidents and will drive positive changes to minimize health inequalities for marginalized patient communities that has been long neglected. We are extremely appreciative of MPP Andrea Khanjin and MPP Rudy Cuzzetto and the Members of the Legislative Assembly of Ontario for supporting our patients and their families in acknowledging May 8th International Thalassemia Day and June 19th World Sickle Cell Awareness Day as awareness days in Ontario.”
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.