Eglinton-Lawrence MPP Mike Colle will introduce a private members bill in the Ontario legislature that addresses the challenges faced by sickle cell sufferers.
It will replicate Bill C-605 which was tabled by federal Liberal MP Dr. Kirsty Duncan last December calling on the government to create a comprehensive national strategy for sickle cell disease and thalassemic disorders.
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 haemoglobin.
The bill calls on federal Health Minister Leona Aglukkaq to, among other things, initiate discussions with the provincial and territorial health ministers to develop thorough patient care throughout the life cycle, develop national standards regarding universal screening, create centres of excellence for both paediatric and adult care, assess best practices for patients to succeed at school and in the workplace and recognize June 19 as sickle cell anaemia awareness day in Canada.
“I want to bring more awareness nationally by putting more attention on the disease in Ontario,” Colle said at a press conference last week following the 17-day 500-kilometre Sickle Cell Torch of Life run from Parliament Hill in Ottawa to Queen’s Park. “That will be my contribution to sickle cell sufferers. This is something, speaking as an elected official, that we don’t know enough about and I think it’s about time we share this knowledge.”
Two years ago, Colle introduced the Zero Tolerance to Violence on Public Transit Act in an attempt to address the growing incidence of gun violence on Toronto Public Transit system and Bill 160, The Caregiver and Foreign Worker Recruitment Act, that drew a commitment from the government to introduce legislation to licence “nanny brokers”, ban placement fees and post licensed placement agencies on an online registry.
Sherman Moore, whose sister Gloria Ford died in hospital of sickle cell-related complications a day after childbirth, said he was delighted when Duncan advanced the bill. He and his sisters – Monica Simms and Shirley Moore – have sickle cell.
“Even at our advanced ages, we now dare to dream that we could live to see the day when at the first sign of pain, sickle cell sufferers in Canada would have a place to go not too far from home where they could get prompt treatment and return to their families and their lives without having to endure intense pain, suffering, complications or lengthy and often avoidable hospital stays or worse,” said Moore who was diagnosed with the disease in 1967.
The University of Toronto’s hemoglobinopathy program at Toronto General Hospital is Canada’s only referral centre for the comprehensive management of patients with blood disorders such as thalassemia and sickle cell disease.
Emergency staff do not, however, have access to medical records, doctors are reluctant to administer drugs for the pain, fearing the patient might be a narcotics addict and wait times to be treated could last as long as five hours.
“I am proud to be Canadian and appreciative of the health care system that we have,” said Moore. “It’s surely one of the best in the world. Any child or parent of a child with sickle cell, who happens to live in the Toronto area and who visit Toronto General for treatment, have experienced quality care. And that’s the level of care all sickle cell patients need and deserve.
“However, there is room for improvement in our system, especially in the time it takes for people in sickle cell crisis to get treatment. Logic and personal experience tell me that treating a sickle cell patient in crisis quickly upon arrival in hospital can definitely reduce the number of admissions.”
Dr. Isaac Odame, the co-director of the hemoglobinopathy program at Toronto General Hospital, said the institution plans to start a day program for children shortly to reduce wait times and admissions.
“The plan is that everything will be in place when the child comes in during the day that they would not have to go through emergency and physicians will be ready to treat them,” he said. “In that way, we believe that by the end of the day, most of those children would be ready to go home. The same can also be done for adults. This is a better, smarter and cheaper way to do things than the way we do it right now.”
The Sickle Cell Foundation of Canada Eglinton Community Support Group, the Sickle Cell Awareness Group of Canada and Step by Step Organ Transplant Association teamed up to organize the torch relay to canvas support for Bill C-605.
Toronto police officer Ojo Tewogbade was among the torchbearers. His 27-year-old daughter, Florence, was diagnosed with sickle cell disease 13 years ago. She expects to receive a kidney transplant next month.
Lanre Tunji-Ajayi, who set up the Seed of Life philanthropic organization six years ago to raise awareness about the hereditary disorder that affects mostly people of colour, accompanied the torch on the final leg from Toronto General Hospital to Queen’s Park.
Her brother, Sunday Afolabi who lived in Nigeria, succumbed to the disease a decade ago.
Representatives of Camp Jumoke, the only camp of its kind in Canada that serves the unique emotional and health care needs of children with sickle cell disease, also participated in the final torch relay leg led by Toronto Police deputy chief Peter Sloly, Colle, deputy Mayor Frances Nunziata and Westview Centennial Secondary School students.
“I am inspired by the hard work of the researchers, doctors and nurses at Toronto General Hospital which is the only facility in the province providing comprehensive health care,” said Nunziata.