OWMANVILLE -- The call for a national health-care strategy for those with sickle cell anemia blazed into Clarington on Feb. 14.

"When comprehensive health care does get passed, people with sickle cell will be able to get care and treatment," said George Marcello, who carried the Sickle Cell Torch of Life Run into Clarington.

Sickle cell anemia is a rare hereditary blood condition. The red blood cells break down or become stiff and block vessels in the body, causing pain in the bones and potentially serious damage to organs. It can be fatal.

It's estimated five per cent of the population has the genetic predisposition for sickle cell.

"It can get out of hand. This is preventable but we need the tools," said Mr. Marcello. "We don't even know the numbers because we haven't had the money to do the research."

Sickle cell disease tends to afflict those of African descent.

"Disease is a disease, it doesn't care what colour or where you come from," said Mr. Marcello.

Those suffering from sickle cell anemia try to manage the disorder by taking good care of their bodies, getting regular blood transfusions or taking daily medication. There is a lack of availability for ongoing health management, according to Mr. Marcello.

"To see this in our country, these new Canadians are suffering and there is no care," said Mr. Marcello.

Advocates for those suffering from sickle cell disease want to see a national health-care strategy for the disorder. In 2010, Etobicoke North MP Kirsty Duncan introduced a private member's bill for a national strategy to comprehensively manage affected patients to improve outcomes.

Mr. Marcello said he has high hopes for Bill C-605.

"Give your MP a little nudge, as well as your MPP," Mr. Marcello told municipal politicians. "It'll cover 95 per cent of the issues now. We're hoping that will pass as a result of this run."

Mr. Marcello was nearing the end of his 500-kilometre, 17-day run from Parliament Hill in Ottawa to Queen's Park in Toronto. Part way through the run, he twisted his knee. He arrived in Bowmanville, on the morning of Feb. 14, carrying the torch in one hand and using the other to support his weight on a cane.

"It's been a long run, even though it's just 17 days. It went from a run, to a walk, to a hobble," said Mr. Marcello, who planned to arrive in Toronto on Thursday, Feb. 17. "We somehow made it."

The torch has been used in many runs for organ and tissue donation awareness. It was blessed by the Pope and has travelled most of the world to raise awareness of the need for donors. Mr. Marcello had a liver transplant and he has since been an activist for organ and tissue donation.

"I was given a gift and now I'm paying it forward," said Mr. Marcello, who has been on seven previous runs to promote donation.

There is currently only one cure for sickle cell disease, a bone marrow transplant. This is only done rarely, usually for children with severe sickle cell disease, according to the Sickle Cell Awareness Group of Ontario.

"People suffering from sickle cell disease can have their lives saved with a bone marrow transplant. Canada doesn't have sickle cell listed as one of the illnesses that can be saved by bone marrow transplant," said Mr. Marcello.

Mayor Adrian Foster, Councillors Willie Woo and Ron Hooper met Mr. Marcello at the Bowmanville town hall. They told Mr. Marcello about the New Year's Day Polar Bear Swim to raise awareness for organ donation and offered to bring a motion to council to encourage higher levels of government to support better health care for sickle cell anemia.

"Thank you for raising awareness," said Mayor Foster.

For more information on the Sickle Cell Torch of Life Run, visit www.stepbystep.ca.

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