Torch of Life comes to town Friday in support of Sickle Cell disease research
Posted Feb 3, 2011 By Stacey Roy
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Tweet ThisEMC Events - Step By Step Ontarians are working to promote the need for Sickle Cell treatment across the country. This Friday, Feb. 4 participants in a walk from Parliament Hill to Queen's Park will stop in Smiths Falls to discuss the need for care centres outside of Toronto.
"Hopefully we'll get levels of government aware of this by running with the torch," said George Marcello of Step By Step.
Advocacy is important considering an average Canadian adult living with Sickle Cell Disease can only find care at the Toronto General Hospital despite the fact 75 per cent of Canada's cases of Sickle Cell come from across the province. Lobbyists strongly feel that this must change. Sickle Cell disease is a congenital disorder that results in excruciating pain, progressive organ dysfunction, visual impairment and premature death.
"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," reads a press release from Step By Step, a non-profit organization that has been asked to coordinate the campaign.
ESTABLISH CLINICS
Organizers hope this walk will encourage the province to establish satellite clinics throughout Ontario for those living with Sickle Cell or Thalassemia, which is another condition of haemoglobin.
MP Kirstey Duncan has tabled a bill that asks for a comprehensive national strategy, national standards and universal screening, improved services and better access to information for medical professionals.
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. The responses have often been sympathetic, but there has not been an adequate increase in resource allocation to either Thalassemia or Sickle Cell Disease programs.
"Having comprehensive adult care clinics in strategic locations across the province and the nation will allow for more patients to have access to health care services they require, attend regular clinics with appropriately trained health care providers and ensure that their needs are meet," reads a press release.
Sickle Cell disease originated in Africa, but can now be found around the world.
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