Second reading of Bill S-280, An Act respecting a national framework on sickle cell disease

By: The Hon. Wanda Thomas Bernard

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Ceremonial Guard on Parliament Hill, Ottawa

Hon. Wanda Thomas Bernard: Honourable senators, I rise today in support of Bill S-280, An Act respecting a national framework on sickle cell disease. Thank you to my colleague Senator Mégie for giving us a comprehensive overview of sickle cell disease. We are privileged to have her medical expertise to inform the chamber about the complex medical details and challenges of this hereditary disease impacting descendants of Africa, the Caribbean, the Middle East, South America and certain regions of India and the Mediterranean.

I would also like to thank my colleague Senator Cordy for being a champion of this issue for many years, including her work in 2017 to have National Sickle Cell Awareness Day recognized. I want to thank and recognize the work of the honourable Tony Ince, MLA for Cole Harbour-Portland Valley, who presented and supported Bill 396, An Act to Establish a Sickle Cell Awareness Day, in November 2023 in my home province of Nova Scotia. June 19 will now be observed as Sickle Cell Awareness Day in Nova Scotia.

I support Bill S-280 and urge that it be sent to committee to be studied as soon as possible. Sickle cell disease impacts people living at a particularly vulnerable intersection — the intersection of race and disability. With daily life being so significantly impacted by the forces of racism and ableism, I believe this framework has a particularly important role in improving the lives of Black people with sickle cell disease. This intersection is the result of systemic issues and policy gaps. It requires policy solutions like this framework.

I agree with the importance of creating a national research network, improving training and diagnostic tools, setting evidence-based national standards, creating equitable neonatal screening, supporting public awareness campaigns and implementing a tax credit for families.

Members of my extended family and kinship group have been impacted by sickle cell anemia. For many years, African Nova Scotians suffered in silence because this chronic illness was considered a taboo topic — one you didn’t talk about anywhere or to anyone. I am grateful for the leadership of people like Dr. Josephine Etowa, which began when she was a graduate nursing student — she had the courage to take a stand — and Rugi Jalloh, who has led the volunteer work in Nova Scotia and across Canada on this issue. Their efforts have helped to raise awareness, reduce stigma and create policy changes. Now, colleagues, it is time to broaden the scope of this work nationally, and Bill S-280 positions us to do that.

In 2013, the Nova Scotia government announced the introduction of the Maritime Newborn Screening Program. Dr. Josephine Etowa was — as I said earlier — a graduate nursing student instrumental in bringing the sickle cell screening of newborns to Nova Scotia. The ability to screen babies as early as possible saves lives. It means that babies can access life‑saving treatments early, preventing irreversible damage, reducing future hospitalizations and preventing serious symptoms from developing.

Dr. Etowa studies racism in health systems, and through her research, she identified the issue of a lack of screening for sickle cell disease. This early screening program is an excellent working example of race equity in the health system. A test that in mainstream medical systems may not seem to make a remarkable change for most children has the power to make a significant change specifically for Black families and other racialized families whose quality of life would be improved with the knowledge of an early diagnosis. Essentially, colleagues, this is an example of bringing a culturally responsive lens to health care systems.

I consulted with Ase Community Foundation for Black Canadians with Disabilities, who stated that they are in support of Bill S-280 in principle due to the capacity the bill has to improve the lives of Black people with this chronic illness. They recommend that the bill explicitly recognize the intersectionality of race and disability and how anti-Black racism impacts health outcomes and access to support and care. They also suggest that the bill explicitly recommend the framework include culturally responsive training for health care professionals.

They stated:

Bill S-280 represents a crucial step toward recognizing and addressing the unique challenges Black Canadians face with sickle cell disease.

When this bill goes to committee, I encourage you to invite Dr. Etowa and the Ase Community Foundation as witnesses. You will be enlightened.

The Sickle Cell Disease Association of Atlantic Canada recently sent out a newsletter, and in it the founder and President, Rugi Jalloh, recounted an interaction they had when they asked a person with sickle cell disease how they were doing. Their response was, “It hurts to breathe, but hey, I’m glad to be alive.”

They shared that this person was unable to attend the entire semester at university due to multiple hospitalizations, even with the usual educational accommodations that were offered. I share this person’s story to highlight how sickle cell disease can prevent people from accessing education and, subsequently, meaningful employment.

Honourable colleagues, for a person with sickle cell disease, the impact touches every area of their life, and a framework addressing this disease has the capacity to change lives for Black Canadians who live with sickle cell anemia.

I believe their lives are worth it. I urge you to see the importance of supporting Bill S-280, and I look forward to the committee work our colleagues will do to examine the whole impact of this proposed framework.

Asante. Thank you.

Some Hon. Senators: Hear, hear.

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