Rare Disease Strategy urgently needed to help 3 million Canadians

Strategy must be implemented to give those with rare diseases the same access to prevention and treatment as patients with cancer, heart disease and diabetes

EDMONTON, Oct. 7, 2015 /CNW/ - The nearly 3 million Canadians with rare diseases who face seemingly insurmountable barriers are calling for the same quality of healthcare as those with cancer, heart disease and diabetes.  Today, at a panel discussion organized by the Economic Club of Canada, participants were provided with a strategy, ready to go, that just needs the political will for implementation so we can begin to tear down barriers and build hope.

Canada's Rare Disease Strategy was developed and announced earlier this year by the Canadian Organization for Rare Disorders (CORD) following extensive consultations with hundreds of diverse stakeholders over the past two and a half years.

"Rare disease is a public health challenge similar to what we recognized with cancer, heart disease and diabetes several decades ago," said Durhane Wong-Rieger, President and CEO of CORD, one of the panelists. "The strategies we put in place years ago in each of these areas have resulted in significant improvements in the burden of illness, quality of life and survival. Now we need to do the same for rare diseases.  National rare disease plans have already been adopted in more than 30 other countries. Thanks to the input of healthcare providers, patients, scientists, volunteer caregivers, pragmatic financiers and idealistic dreams we now have a strategy that is both ambitious and achievable, if it is embraced and implemented."

Canada's Rare Disease Strategy was launched on Parliament Hill in May and calls on the federal and provincial governments to work together with the rare disease community to overcome barriers faced by individuals living with rare diseases, including long delays in diagnosis, problems accessing experts (especially across provinces), and timely access to treatments. The Strategy also addresses the need for national standards for newborn screening for genetic disorders and dedicated funding for rare disease research in Canada.

Fred Horne, Alberta's health minister from 2011 to 2014 and Adjunct Professor at the University of Alberta School of Public Health, moderated today's event. "It's time for Canada to catch up with other countries and recognize that access to rare disease therapeutics is part of mainstream healthcare.  Canada's Rare Disease Strategy is a plan that we can implement now to ensure that Canadians living with rare diseases have access to testing, diagnosis, medical experts and emerging treatments on par with high-performing healthcare systems in other countries."

Promoting research and translating its results into solutions that benefit patients are important elements of the Strategy. The research community was represented on the panel by Dr. Ian M. MacDonald, Professor in the Department of Ophthalmology and Visual Sciences at the University of Alberta whose research interest is inherited retinal disorders. "Canada must harness our great research expertise and global research links to better care for Canadians with rare diseases. The practical tactics of the Rare Disease Strategy will help ensure this happens," he said.

"All patients, regardless of their disease, should be able to benefit from new treatments and timely access to optimize their health and quality of life.  However, this is not the reality for patients with rare diseases," said Ed Gudaitis, General Manager, Gilead Sciences Canada, Inc., who provided a perspective from the biopharmaceutical sector.  "Our industry, in partnership with governments, must embrace a Rare Disease Strategy and commit to advancing and approving innovative treatments, enhancing access to breakthrough therapies, and ultimately, improving the lives of all patients." 

"When my husband was diagnosed with myelofibrosis, a rare bone marrow disorder, we struggled to find the right information and care.  Canada has great healthcare resources, and what this Strategy will do is help ensure Canadians with rare diseases will have equal access," said Cheryl Petruk of Edmonton, chair of the Canadian MPN Network, who spoke at today's event.

The Edmonton panel discussion is the second of five being held across the country by CORD and the Economic Club of Canada in the coming months to discuss the need for prompt implementation of Canada's Rare Disease Strategy. The first was in Toronto last month while others will follow in Ottawa, Montreal and Vancouver.

About Canada's Rare Disease Strategy

Canada's Rare Disease Strategy was developed by the Canadian Organization for Rare Disorders following extensive consultations with patients, caregivers, healthcare providers and researchers, as well as public and private-sector groups. It was launched on Parliament Hill in May 2015. It establishes five major goals with a total of 20 related and practical actions. The five goals are: improving early detection and prevention; providing timely, equitable and evidence-informed care; enhancing community support; providing sustainable access to promising therapies; and promoting innovative research. For the complete plan, go to: www.raredisorders.ca/canadas-rare-disease-strategy/

About the Canadian Organization for Rare Disorders (CORD)

CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. www.raredisorders.ca

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Follow the panel discussion and the Economic Club Series on Twitter: #Canada4Rare

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SOURCE Canadian Organization for Rare Disorders

Sophie LaPointe, The Economic Club of Canada, [phone], [email protected]; Durhane Wong-Rieger, Canadian Organization for Rare Disorders, [phone], [email protected]