Support Bill C-221: An Act respecting a comprehensive National strategy for Sickle Cell Disease and Thalassemic Disorders
PETITION to the House of Commons in Parliament assembled
WHEREAS sickle cell and thalassemic disorders are inherited and result in abnormal or inadequate haemoglobin production in affected;
WHEREAS the life span of persons with severe sickle cell disease can be reduces by as much as 30 years;
WHEREAS an estimated 5 -25% of Canadians of African, Caribbean, Mediterranean and Asian descent carries the trait gene for sickle cell and thalassemia;
WHEREAS sickle cell disease can lead to severe chronic pain, serious bacterial infections and acute and chronic organ damage;
WHEREAS Ontario and British Columbia are the only provinces in Canada that have universal newborn screening programs for sickle cell disease;
WHEREAS the management of sickle cell and thalassemic disorders does not uniformly conform to the highest standards in Canada;
WHEREAS greater public awareness of these diseases and systematic genetic testing could be helpful in control and management of these disorders across Canada;
WHEREAS the Parliament of Canada believes that the prospects and life circumstances of patients suffering from sickle cell disease and thalassemic disorders must be improved through the development of a comprehensive national strategy for patient care;
THEREFORE, we, the undersigned, residents of Canada, call upon the House of Commons in Parliament assembled to adopt the Bill entitled An Act respecting a Comprehensive National Strategy for Sickle Cell Disease and Thalassemic Disorders (numbered Bill C-221 in the 41st Parliament).
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, 2012.
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 to promote awareness of these disorders.
The Bill also proclaims June 19 in each year as Sickle Cell and Thalassemia Awareness Day.
Support Bill 165 - MPP Mike Colle's Sickle Cell and Thalassemia Care Ontario Act
PETITION
To the Legislative Assembly of Ontario:
WHEREAS Sickle cell and thalassemic disorders are chronic genetic diseases that can cause progressive organ dysfunction and premature death;
WHEREAS an estimated 5 per cent of the world's population are carriers of genetic traits for sickle cell or thalassemic disorders;
WHEREAS Ontario is home to over 75 per cent of Canadians living with sickle cell disorder, and the large majority of Canadians with thalassemic disorders;
WHEREAS Ontario already has Canada's only Newborn Screening Program for Sickle Cell, and has excellent programs and treatment centres at Sick Kids Hospital and Toronto General Hospital;
WHEREAS greater public awareness of these diseases and the benefits of genetic testing are needed in the Province of Ontario;
Download Petition Form
Download Bill 165
Bill C-605
The story truly begins with Hon. Kirsty Duncan approaching us with her intention to help Sickle Cell Disease.
This led her along with Dr. Isaac Odame and Dr. Melanie Kirby to start working on the National Bill C-605 for Sickle Cell Disease and Thalassemia and was introduced shortly in the Parliament. To raise more awareness around this Bill, Sickle Cell Awarenss Group of Ontario, and the Sickle Cell Foundation of Canada- Eglinton Sickle Cell Group invited the other Sickle Cell groups and the Thalassemia Foundation of Canada.
A Torch Run from Ottawa to Toronto for Bill C-605 and More Comprehensive Care sites in Canada was born under the leadership of Mr. Bodun Macaulay (EGlinton Sickle Cell Goup), Constable Ojo Tewogbade (Eglinton Sickle Cell Group), Ms. Lanre Tunji-Ajayi (SCAGO) and Mr. George Marcello (Step by Step Organ Transplant Association).
SCAGO, Eglinton Sickle Cell Group, The Ottawa Parents Support Group, The Hematologist from Ottawa hospital and the Children Hospital of Eastern Ontario, Ottawa came out and did part of the run starting from the Parliament Hill- What a bitingly cold day, but yet the walkers pressed on!
We are very grateful indeed.
The Torch of Life continued and landed at Queen's Park on February 17th. George Marcello, Const. Tewogbade, Don Moreland and Shane all deserve medals as they are the heroes that completed all the 17 days of walk. (February 1st -17th)
Special gratitude must also be given to Dr. Jacob Pendergrast who on a short notice got the Tree of life location for us to offer a short prayer before we proceeded to Queen's park , Dr. Melanie Kirby-Allen, Dr. Odame, Ms. Doris Baxter, Ms. Marcia Palmer who all walked from Toronto General Hospital to the Queens Park to support Bill C-605. We are very grateful for your dedication and efforts
We must recognize and thank MPP Mike Colle who at the February 17th press conference which was supported by the other Sickle Cell Groups- inclusive of Ms. Naomi Jules of Sickle Cell Miracle Network, Ms. Yvonne Clarke & Ms.Karen Fleming of Camp Jumoke and Mr. Riyad Elbard of Thalassemia Foundation promised to introduce a Bill to replicate the National Bill C-605.
On meeting with the MPP on March 2nd, 2011 along with Dr. Odame, Mr. Bodun Macaulay and Riyad Elbard of Thalassemia foundation, it is without any shadow of doubt that we know that this bill is the way forward for Ontario- Thank you once again Mr. Colle for promising and fulfilling the promise
Our joy is full today on March 10th, 2011 when this Bill 165 that was promised us at the completion of the Torch Run at Queen's Park press conference of February 17th was finally introduced. This has made all the hard work and planning for The Torch Run from Ottawa to Toronto, worthwhile.
I must also appreciate Ms. Melissa from MPP Colle's office that helped to coordinate the meetings and the press conference.
Congratulations everybody and please remember, this bill has just been introduced and to pass it as law, we must do a lot of awareness initiatives and make our voices audible.
The Sickle Cell Groups and Thalassemia Foundation will continue to push forward not only on this initiative but other Awareness initiatives as well
Thank you again for all your support as SCAGO continues to be a strong voice for those living with Sickle Cell Disease.
| Tues Feb 1 Day 1 – 27 km- Parliament Hill to Stittsville Stay at Ottawa East Comfort Inn for 2 days -11:00 am Parliament Hill Ottawa ON, Press Conference – -11:45 am – Torch gets lit at Centennial Flame -5:00 pm arrives in Stittsville Amberwood Golf Club Wed Feb 2 Day 2 – 22.5 km- Stittsville to Carleton Place Thur Feb 3 Day 3 – 34 km – Carleton Place to Perth Fri Feb 4 Day 4 – 30 km – Perth to Jasper Sat Feb 5 Day 5 – 37.3 km Jasper to Brockville Sun Feb 6 Day 6 – 23.4 km Brockville to Mallorytown Mon Feb 7 Day 7 – 29.4 km Mallorytown to Gananoque Tues Feb 8 Day 8 – 31.5 Gananoque to Kingston Wed Feb 9 Day 9 – 37.8 km Kingston to Napanee |
Thur Feb 10 Day 10 – 39 km Napanee to Belleville Stay at Comfort Inn in Belleville -9:00 am Press Conference -3:00 pm arrives in Belleville City Hall Fri Feb 11 Day 11 – 25.2 km Belleville to Trenton Sat Feb 12 Day 12 – 52 km Trenton to Cobourg Sun Feb 13 Day 13 – 38.1 km Cobourg to Clarington Mon Feb 14 Day 14 – 28 km Clarington to Oshawa Tues Feb 15 Day 15 – 22.5 Oshawa to Pickering Wed Feb 16 Day 16 – 20.6 Pickering to Toronto Thur Feb 17 Day 17 – 20 km Westview C.S.S to Queens Park |
Sickle Cell Foundation of Canada - Eglinton Community Support Group
Sickle Cell Emergency Response
Champion(s) carries Torch of Life From Parliament Hill to Queen's Park
The Urgency- Shining the light on Comprehensive Care for Sickle Cell Anemia
Comprehensive care for adult patients living with Sickle Cell Disease is very limited as currently only Toronto General Hospital (TGH) provides this program for adult patients. More work is needed on building satellite programs not only throughout the Greater Toronto Area (GTA) but to also have more comprehensive clinics throughout the country. In the last year, we have lost 5 young adults whose death might have been prevented if we have a more extensive network of satellite comprehensive programs were available.
Sickle Cell Disease is a congenital disorder of hemoglobin that results in anemia and intermittent blockage of blood vessels. The result is recurrent episodes of excrutiating pain, progressive organ dysfunction, visual impairment, and premature death. Patients with thalassemia, another disorder of hemoglobin that requires comprehensive care, are at risk of iron overload, which also results in progressive organ dysfunction and premature death. Disorders of hemoglobin, such as sickle cell disease and thalassemia, are the most common congenital diseases in the world, and the number of patients in Canada with these conditions continues to grow.
Over the last 10 years, hospitals, regional health authorities and the Ministry of Health have received recurrent pleas for additional resources for adult comprehensive care centres for both Thalassemia and Sickle Cell patients. Although the responses have often been sympathetic, there has not been an adequate increase in resource allocation to either Thalassemia or Sickle Cell Disease programs.
Ontario is home to over 75% of Canadians living with Sickle Cell Disease, and the large majority of Canadians with thalassemic syndromes, and yet Toronto General Hospital (TGH) in downtown Toronto is the only facility in the province offering an adult comprehensive care program for these conditions. Moreover, the majority of patients in the GTA with these conditions do not live in the downtown core area and must therefore travel significant distances to obtain comprehensive care.
While all hospitals may not necessarily establish comprehensive Sickle Cell and Thalassemia clinics to accommodate patients, it would be extremely beneficial to the patient community and be a cost effective strategy for the Ministry of Health if there are satellite programs across the GTA, not to mention within the rest of the province of Ontario and Canada as a whole.
Having comprehensive adult care clinics in strategic locations across the province and the nation will allow for more patients to have access to healthcare services they require, attend regular clinics with appropriately trained healthcare providers and ensure that their needs are meet, thereby improving their overall health outcomes and lifespan.
The deaths of young adults with these diseases in Canada are occurring at a time when other countries with comparable populations that have integrated comprehensive care programs are having fewer or no deaths! As a country blessed with an exemplary health care system, Canada should strive to achieve the same if not better outcomes for its citizens.
The story truly begins with Hon. Kirsty Duncan approaching us with her intention to help Sickle Cell Disease.
This led her along with Dr. Isaac Odame and Dr. Melanie Kirby to start working on the National Bill C-605 for Sickle Cell Disease and Thalassemia and was introduced shortly in the Parliament. To raise more awareness around this Bill, Sickle Cell Awarenss Group of Ontario, and the Sickle Cell Foundation of Canada- Eglinton Sickle Cell Group invited the other Sickle Cell groups and the Thalassemia Foundation of Canada.
A Torch Run from Ottawa to Toronto for Bill C-605 and More Comprehensive Care sites in Canada was born under the leadership of Mr. Bodun Macaulay (EGlinton Sickle Cell Goup), Constable Ojo Tewogbade (Eglinton Sickle Cell Group), Ms. Lanre Tunji-Ajayi (SCAGO) and Mr. George Marcello (Step by Step Organ Transplant Association).
SCAGO, Eglinton Sickle Cell Group, The Ottawa Parents Support Group, The Hematologist from Ottawa hospital and the Children Hospital of Eastern Ontario, Ottawa came out and did part of the run starting from the Parliament Hill- What a bitingly cold day, but yet the walkers pressed on!
We are very grateful indeed.
The Torch of Life continued and landed at Queen's Park on February 17th. George Marcello, Const. Tewogbade, Don Moreland and Shane all deserve medals as they are the heroes that completed all the 17 days of walk. (February 1st -17th)
Special gratitude must also be given to Dr. Jacob Pendergrast who on a short notice got the Tree of life location for us to offer a short prayer before we proceeded to Queen's park , Dr. Melanie Kirby-Allen, Dr. Odame, Ms. Doris Baxter, Ms. Marcia Palmer who all walked from Toronto General Hospital to the Queens Park to support Bill C-605. We are very grateful for your dedication and efforts
We must recognize and thank MPP Mike Colle who at the February 17th press conference which was supported by the other Sickle Cell Groups- inclusive of Ms. Naomi Jules of Sickle Cell Miracle Network, Ms. Yvonne Clarke & Ms.Karen Fleming of Camp Jumoke and Mr. Riyad Elbard of Thalassemia Foundation promised to introduce a Bill to replicate the National Bill C-605.
On meeting with the MPP on March 2nd, 2011 along with Dr. Odame, Mr. Bodun Macaulay and Riyad Elbard of Thalassemia foundation, it is without any shadow of doubt that we know that this bill is the way forward for Ontario- Thank you once again Mr. Colle for promising and fulfilling the promise
Our joy is full today on March 10th, 2011 when this Bill 165 that was promised us at the completion of the Torch Run at Queen's Park press conference of February 17th was finally introduced. This has made all the hard work and planning for The Torch Run from Ottawa to Toronto, worthwhile.
I must also appreciate Ms. Melissa from MPP Colle's office that helped to coordinate the meetings and the press conference.
Congratulations everybody and please remember, this bill has just been introduced and to pass it as law, we must do a lot of awareness initiatives and make our voices audible.
The Sickle Cell Groups and Thalassemia Foundation will continue to push forward not only on this initiative but other Awareness initiatives as well
Thank you again for all your support as SCAGO continues to be a strong voice for those living with Sickle Cell Disease.