Bill 165 2011

An Act to establish Sickle Cell and Thalassemia Care Ontario and to proclaim Sickle Cell and Thalassemia Awareness Day

Preamble

Sickle cell and thalassemic disorders are debilitating genetic diseases that can cause organ dysfunction, limit an individual's quality of life and shorten their lifespan.  There are more and more children and adults in Ontario who have sickle cell or thalassemic disorders, although there are significant gaps in research about the prevalence of the disorders.  It is estimated that 5 per cent of the world's population are carriers of genetic traits for sickle cell or thalassemic disorders.

The Province of Ontario is leading the way among provinces in recognizing the seriousness of sickle cell and thalassemic disorders.  In 2006, Ontario established screening programs to identify newborns who have sickle cell or other blood disorders.  The next step is to provide provincial co-ordination of comprehensive healthcare.  This is crucial for ensuring that individuals and families have lifelong access to quality healthcare, genetic counselling and social support.

Sickle Cell and Thalassemia Care Ontario is intended to improve the co-ordination of healthcare resources, promote awareness and education and advocate on behalf of individuals who have sickle cell or thalassemic disorders and their families.

In co-operation with healthcare professionals, hospitals, research institutions and advocacy groups, Sickle Cell and Thalassemia Care Ontario will develop provincial strategies for improving the co-ordination and quality of sickle cell and thalassemia healthcare.

Proclaiming June 19 as Sickle Cell and Thalassemia Awareness Day in Ontario increases awareness of these blood disorders and dedicates a day to support individuals who have sickle cell or thalassemic disorders and their families.

Therefore, Her Majesty, by and with the advice and consent of the Legislative Assembly of the Province of Ontario, enacts as follows:

Part I
Sickle Cell and Thalassemia Care Ontario

Definitions

   1.  In this Part,

"Corporation" means Sickle Cell and Thalassemia Care Ontario established under subsection 2 (1); ("Société")

"Minister" means the Minister of Health and Long-Term Care or any other member of the Executive Council to whom responsibility for the administration of this Act is assigned or transferred under the Executive Council Act. ("ministre")

Sickle Cell and Thalassemia Care Ontario established

   2.  (1)  A corporation without share capital is hereby established under the name Sickle Cell and Thalassemia Care Ontario in English and Traitement des affections drépanocytaires et des thalassémies Ontario in French.

Membership

   (2)  The members of the Corporation shall consist of the members of its board of directors.

Objects of the Corporation

   3.  The objects of the Corporation are,

  (a)  to work in co-operation with health professionals, hospitals, research institutions and advocacy groups to develop strategies for improving the co-ordination and quality of health care provided in Ontario to individuals who have sickle cell or thalassemic disorders;

  (b)  to promote awareness of and educate the public about sickle cell and thalassemic disorders;

   (c)  to improve the co-ordination of healthcare resources for individuals who have sickle cell or thalassemic disorders by assisting them and their caregivers to connect with and gain access to healthcare and social support resources;

  (d)  to advocate on behalf of individuals who have sickle cell or thalassemic disorders;

  (e)  to encourage members of the public to have genetic testing performed to identify carriers of the sickle cell or thalassemia gene;

    (f)  to assist carriers of the sickle cell or thalassemia gene to gain access to genetic counselling;

  (g)  to monitor and track the prevalence of sickle cell and thalassemic disorders in Ontario and assess the sufficiency of treatment centres and other healthcare services available to individuals who have sickle cell or thalassemic disorders;

   (h)  to collaborate with the Government of Canada and the governments of the provinces and territories of Canada to develop comprehensive strategies for the healthcare of individuals who have sickle cell or thalassemic disorders. 

Board of directors

   4.  (1)  The board of directors shall be composed of a minimum of 10 and a maximum of 15 members, appointed by the Lieutenant Governor in Council.

Vacancies

   (2)  The Lieutenant Governor in Council may fill any vacancy among the members of the board.

Auditor

   5.  (1)  The Corporation shall appoint one or more auditors licensed under the Public Accounting Act, 2004 to audit annually the accounts and financial transactions of the Corporation.

Auditor's report

   (2)  The Corporation shall give a copy of every auditor's report to the Minister. 

Minister's audit

   (3)  The Minister may require that any aspect of the affairs of the Corporation be audited by an auditor appointed by the Minister.

Annual report

   6.  (1)  The Corporation shall give the Minister an annual report on the affairs of the Corporation for the preceding fiscal year and shall include in the report such information as the Minister may specify.

Table report

   (2)  The Minister shall lay the annual report before the Assembly if it is in session or, if not, at the next session.

Part II
Sickle Cell and Thalassemia Awareness Day

Awareness Day

   7.  June 19 in each year is proclaimed as Sickle Cell and Thalassemia Awareness Day.

Part III
Commencement and Short Title

Commencement

   8.  This Act comes into force on the day it receives Royal Assent.

Short title

   9.  The short title of this Act is the Sickle Cell and Thalassemia Care Ontario Act, 2011.

 

EXPLANATORY NOTE

The Bill establishes Sickle Cell and Thalassemia Care Ontario as a corporation without share capital.  The objects of the Corporation include taking measures to improve the co-ordination and quality of healthcare for individuals who have sickle cell or thalassemic disorders and promote awareness of these disorders.

The Bill also proclaims June 19 in each year as Sickle Cell and Thalassemia Awareness Day.