moved that Bill S-201, An Act respecting a national framework on sickle cell disease be read the first time.
Mr. Speaker, I am honoured to rise to introduce Bill S-201, the national framework on sickle cell disease act.
Sickle cell disease is one of the most common genetic conditions in the world, yet it remains largely invisible in our health care system. Here in Canada, thousands of people, disproportionately from Africa, the Caribbean, the Middle East, South Asia, the Mediterranean and other racialized communities, live with daily pain, frequent hospitalizations and systemic barriers to care.
This bill would require the federal government to work with patients, health care professionals, provinces and territories, and community organizations to develop a comprehensive national framework. It would improve awareness and training in our health system, support research and a national registry, promote universal newborn screening and timely diagnosis, and establish a national standard of care. It would also require public awareness, family supports and equitable access to essential treatments, including blood products and emerging therapies.
I want to thank all the advocates from across Canada, especially the Sickle Cell Disease Association of Canada, for their advocacy on this specific bill. It has taken a long time to get here.
(Motion agreed to and bill read the first time)