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: email@example.com
June 14, 2017
Delta Hotel Toronto, 75 Lower Simcoe Street
Roadmap to Optimal Drug Access Amendments to Patented Medicines Regulations and Ontario Kids’ Pharmacare (OHIP+)DRAFT AGENDA WHAT WE WANT TO ACHIEVE Outcome: Each stakeholder to be able to provide meaningful input on Amendments to Patented Medicines Regulations benefitting from perspectives of others To that end Share expertise, knowledge, and evidence Exchange needs, interests, and concerns Deliberate toward common positions Recognize unique views In the end Expand mandate from simplistic singular focus of “protecting Canadians from excessive drug prices” to realistic collective goal of “ensuring all Canadians have access to best possible medicines at prices that are affordable today and invest in tomorrow.” * To receive member rates you must login at the top right hand corner of raredisorders.ca Refund Policy: Cancellations received a minimum of 15 days prior to the event will receive a refund minus an administrative fee of $15.00. This fee covers the cost of processing the registration and refund. Cancellations received after the 15-day deadline and no-shows are non-refundable.