Hon. Sharon Burey: Colleagues, I rise today to speak to Bill S-280, An Act respecting a national framework on sickle cell disease.

This national framework must include measures to increase awareness, address training needs, create a national research network and a national registry, ensure equitable access to neonatal screening and consider an analysis of the financial impact on patients and families.

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I will be speaking as the critic of this bill and, colleagues, this is my first attempt at being a critic.

Hon. Sharon Burey: Thank you so much, Senator Clement. This is a very important point. I want to return to something that Senator Cordy mentioned in her speech when it was the Honourable Dr. Jean Augustine who spoke about sickle cell disease and everyone said, “What is that?” not knowing that it affected so many Canadians.

The lack of awareness is one of the reasons why there is so much stigma associated with it. We spoke of the vaso-occlusive crisis, which are painful events when you come in and you are thought of as a drug-seeking person so you are stigmatized and not given appropriate pain medication. We already know from many research studies that when racialized people go to the hospital asking for pain medication, their pain score is thought to be not as relevant as someone from another ethnic group.

We know there is a lot of work to be done. I think that having this bill to raise awareness will help to decrease that stigma. It will also allow people to talk about it — I’m talking about people who are suffering from sickle cell disease — so that it will be able to enter the conversation. We all know about mental health and how, for a long time, we know that it came out of the Senate in Out of the Shadows at Last, the mental health report that was so important. Talking about it brings things out of the shadows. That is what is really important.

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