TORONTO, Oct. 17, 2016 /CNW/ – Twelve years after the Federal, Provincial and Territorial Health Ministers committed to developing a plan for rare disease drugs, patients are standing outside the site of the annual Health Ministers’ meeting in downtown Toronto asking, “When will you deliver on the promise?”
Back in 2005, dozens of families affected by rare diseases, demonstrated for two days outside the Health Ministers’ Annual Meeting pleading for access to life-saving therapies for two specific conditions. The Ministers agreed to fund the drugs and also to develop a national plan. They made good on the two drugs, and today every one of those patients at the demonstration is alive. But the national Drugs for Rare Diseases plan never materialized. And the fall-out has been devastating.
According to Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders, “The lack of an access plan means that almost every time there is a new rare disease therapy, patients and families often send out pleas through Facebook and Twitter, appeal for support through newspaper and television, and lobby the politicians.” Because many conditions are severe and progressive, many patients deteriorate and some even die waiting for access to a drug that is already approved by Health Canada.
A disease is considered rare if it affects no more than 1 in 2,000 persons. But, because there are more than 7,000 rare diseases, altogether there are about 2.8 million Canadians with rare diseases, and 60% of them are children. About 40% will die before their sixth birthday.
Today, rare disease patients and caregivers are demanding that the federal government immediately implement the Orphan Drug Regulatory Framework. It has been 34 years since the USA and 17 years since the European Union passed their Orphan Drug Acts. Canada is the only developed country that does not have orphan drug legislation to support research, drug development, and clinical trials.
The Health Ministers have known about Canada’s Orphan Drug Regulatory Framework for three years. On Rare Disease Day (February 29th), all the Parliamentarians wore the yellow scarves symbolizing their support for rare diseases, so CORD is asking, “What is Federal Health Minister Philpott waiting for?” Canadian lives are literally at stake.
Rare disease patients, families, and friends are gathering outside the Health Ministers’ meeting at the King Edward Hotel in Toronto, hoping to get answers to their questions.
For further information: Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders, Direct: (647) 801-5176, Email: durhane@sympatico.ca
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
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