Patients wiating for 12 Years for ‘Rare Disease’ drug plan

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TORONTO – 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. – CNW

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