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Bill S-280

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First Session, Forty-fourth Parliament,

70-71 Elizabeth II – 1-2 Charles III, 2021-2022-2023

SENATE OF CANADA

BILL S-280
An Act respecting a national framework on sickle cell disease
FIRST READING, November 7, 2023

THE HONOURABLE SENATOR MÉGIE
4412335


SUMMARY

This enactment provides for the development of a national framework to support Canadians with sickle cell disease (also known as sickle cell anemia or drepanocytosis), their families and their caregivers.

Available on the Senate of Canada website at the following address:
www.sencanada.ca/en


1st Session, 44th Parliament,

70-71 Elizabeth II – 1-2 Charles III, 2021-2022-2023

SENATE OF CANADA

BILL S-280

An Act respecting a national framework on sickle cell disease

Preamble

Whereas sickle cell disease, also known as sickle cell anemia or drepanocytosis, is a genetic disease of the red blood cells characterized by abnormal hemoglobin that causes a deformation of those cells that can result in the blockage of small blood vessels and the impairment of blood flow;

Whereas blood vessel blockages can affect all parts of the body, leaving them starved for oxygen and unable to function properly;

Whereas the resulting blood vessel blockages and poor blood oxygen levels can lead to severe or chronic pain, serious bacterial infections and tissue death;

Whereas the lifespan of individuals with sickle cell disease shortens according to how badly their organs are affected and what care they receive;

Whereas approximately 5% of the world’s population carries the gene for the disease and this figure can be between 25% and 40% in some parts of the globe;

Whereas sickle cell disease is particularly prevalent among individuals originating in Africa, the Carib­bean, the Middle East, South America and certain regions of India and the Mediterranean;

Whereas sickle cell disease is little known to the public and even to health professionals;

Whereas neonatal screening for the disease needs to be extended across Canada to improve diagnosis and reporting and to ensure appropriate treatment;

Whereas sickle cell disease has a significant impact on the daily lives of individuals affected by the disease, their family members and their caregivers;

And whereas Parliament recognizes the 19th of June as National Sickle Cell Awareness Day;

Now, therefore, His Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

Short Title

Short title

1 This Act may be cited as the National Framework on Sickle Cell Disease Act.

National Framework on Sickle Cell Disease

National framework

2 (1) The Minister of Health must develop a national framework on sickle cell disease.

Content

(2) The national framework must

  • (a) include measures to address the training, education and diagnostic and treatment tool needs of health care professionals relating to sickle cell disease;

  • (b) provide for the creation of a national research network to advance research, improve data collection and establish a national registry on sickle cell disease;

  • (c) set evidence-based national standards for the diagnosis and treatment of sickle cell disease;

  • (d) include measures to ensure equitable access to neonatal screening, to diagnosis and to the provision of results for affected individuals and organizations;

  • (e) include measures to support public awareness campaigns on sickle cell disease; and

  • (f) include an analysis respecting the implementation of a tax credit for individuals with sickle cell disease and their caregivers.

Consultations

(3) For the purpose of developing the national framework, the Minister of Health must consult with

  • (a) the minister responsible for diversity, inclusion and persons with disabilities, the minister responsible for families, children and social development and any other minister who, in the Minister’s opinion, has relevant responsibilities;

  • (b) representatives of the provincial and territorial governments, including those responsible for health, persons with disabilities, mental health and addictions;

  • (c) relevant stakeholders, including self-advocates, caregivers, support persons, service providers, representatives of the medical and research communities, and organizations that the Minister considers to have relevant expertise and experience relating to sickle cell disease; and

  • (d) any other person or entity that the Minister considers appropriate.

Reports to Parliament

Tabling of national framework

3 (1) Within one year after the day on which this Act comes into force, the Minister of Health must prepare a report setting out the national framework on sickle cell disease and cause it to be tabled in each House of Parliament on any of the first 15 days on which that House is sitting after the report is completed.

Publication

(2) The Minister must publish the report on the Department of Health website within 10 days after the day on which the report is tabled in Parliament.

Report

4 Within three years after the day on which the report referred to in section 3 is tabled in Parliament, the Minister of Health must cause to be tabled in each House of Parliament a report setting out

  • (a) the measures from the national framework that have been implemented and their effectiveness in supporting individuals with sickle cell disease, their families and their caregivers; and

  • (b) with respect to any measure included in the national framework that has not been implemented, the reason it has not been implemented and the timeline for doing so.

Published under authority of the Senate of Canada

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