National Sickle Cell Awareness Day

By: The Hon. Jane Cordy

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Hon. Jane Cordy: Honourable senators, yesterday, on Sunday, June 19, we celebrated World Sickle Cell Day and National Sickle Cell Awareness Day in Canada. The recognition of this day has been extremely important and meaningful to the sickle cell community in Canada. Not only does it bring awareness to the disease, but it allows us to celebrate advancement in sickle cell care and it encourages momentum for the work that is left to do.

Since first becoming involved with the sickle cell community through an advocacy event on Parliament Hill in 2013, I have come to know many sickle cell patients, caregivers, supporters and advocates. They speak passionately about their experiences and best next steps to support Canadians living with this disease. The goal is to develop a national strategy for early sickle cell detection and sickle cell care. Honourable senators, I believe this is an achievable goal.

While sickle cell disease is inherited and can affect anyone who has both parents with a sickle cell trait or sickle cell and another hemoglobin trait, it is primarily found in people who are Black, Southern European, Middle Eastern or of Asian-Indian ancestry. It is therefore important to note that systemic racism in health care is, unfortunately, a reality for sickle cell patients. Individuals who present at Canadian hospitals with pain are sometimes treated as drug seekers when compared to their non-racialized counterparts. Racial injustice in health care must be stopped. The Sickle Cell Awareness Group of Ontario have committed themselves particularly to equitable access to comprehensive standard care across the province.

To those who work so diligently on behalf of Canadians with sickle cell disease, I want you to know that your work, energy and enthusiasm are valued. I would like to express my deepest thanks to Lanre Tunji-Ajayi, Biba Tinga, and Rugi Jalloh for the work they have done and the work they continue to do. I also extend my thanks to MPs Darren Fisher and Dr. Kirsty Duncan for their advocacy for those with sickle cell disease and their families. They work tirelessly to keep sickle cell disease and the needs of those with sickle cell at the forefront. Honourable senators, it seems like most days out of the year are linked to recognizing some particular event or disease. It would be easy to dismiss such bills as frivolous; I assure you, they are not. They mean something.

When National Sickle Cell Awareness Day was passed in 2017, the community was overjoyed. Each new person who is made aware of this disease, donates blood or advocates for legislation moves the needle slightly and allows us to better care for Canadians struggling with the disease. This is the reason that on June 19, we celebrate. I encourage you to take some time to learn about sickle cell disease and to meet and speak with those affected in your communities. I have no doubt you will be as touched by their passion as I have been. Thank you.

 

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