Networks building collaborations between sickle cell disease clinicians and scientists need the support of governments to establish entities that are given the mandate to ensure that research and clinical programs are funded and awareness programs are established, says Global Sickle Cell Disease Network managing director, Dr. Isaac Odame.
Dr. Odame singled out federal Liberal Member of Parliament Dr. Kirsty Duncan and provincial MPP Mike Colle for praise in the keynote address at the Sickle Cell Awareness Group of Ontario’s (SCAGO) eighth annual Hope gala and awards last Saturday night.
Colle, who was honoured with a Community Service Award of Excellence, introduced a private members bill in the Ontario legislature last year that addresses the challenges faced by sickle cell sufferers while Duncan tabled Bill C-605 in December 2010 calling on the government to create a comprehensive national strategy for sickle cell disease and thalassemic disorders.
“We need more happening in Canada in terms of government support and that’s why the steps taken by these two politicians are noteworthy and should be commended,” said Odame. “It’s imperative that governments, civil society and other partners do their part to improve the lives of individuals with sickle cell anemia.”
Sickle cell disease is a life-threatening and hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body while thalassemia is an inherited blood disorder in which the body is unable to process normal functioning hemoglobin.
Since 2009, the United Nations has declared June 19 World Sickle Cell Awareness Day.
“The reason why the UN chose to do this is that in order to make progress in any condition that affects us, the first thing you need to achieve is awareness both in the public, educational institutions, policy making, the business sector and in the scientific community,” said Odame who is also an associate professor of pediatrics at the University of Toronto. “If we talk about the disease every year on June 19, at least we will have a few more people who become aware of sickle cell anemia. I challenge each of you to make people aware that it’s a lifelong disorder, it’s a genetic disease and people that are affected by it can go through a lot of problems in their life.”
In 2006, the Ontario government launched a state-of-the-art screening program at the Children’s Hospital of Eastern Ontario in Ottawa. Every newborn in the province is screened for several rare genetic diseases, including sickle cell anemia. Three years ago, British Columbia rolled out an expanded newborn screening program.
“What about the other provinces?” Odame asked. “I think that every child in Canada, regardless of where they are born, should be screened.”
Devastated by the loss to the disease in 1999 of her Nigerian-based brother, Sunday Afolabi, Lanre Tunji-Ajayi created the philanthropic organization in June 2005 to raise awareness about the severe hereditary blood disorder that affects mostly people of colour. A scholarship is also presented in his memory each year.
This year’s recipient was Jesse George who is a SCAGO volunteer and a Ryerson University Urban Planning student.
Rukaya Yakubu, who studied kinesiology for a year at York University before switching to Wilfrid Laurier to pursue nursing, was presented with the Sholape Aribabu memorial bursary while Chika Onovo and Eric Shimba were the recipients of the Olivia Shiwoku scholarships. Aribabu was a Brampton Civic Hospital nurse who died suddenly in 2008 while Shiwoku succumbed to the disease in September 2010 at age 29.
Several Awards of Excellence were presented at the fundraiser.
Share publisher Arnold Auguste was the recipient of the Media Award, Silvia Potter was presented with the Nursing Award, Don Moreland received the Humanitarian Award, Dr. Robert Klassen was recognized with the Medical Award and Princess Sanusi was honoured with the Volunteer of the Year Award.
By RON FANFAIR