Newspaper article The Canadian Press

Federal Government Streamlining Access in Canada to So-Called 'Orphan Drugs'

Newspaper article The Canadian Press

Federal Government Streamlining Access in Canada to So-Called 'Orphan Drugs'

Article excerpt

Feds open the door to 'orphan drugs'


OTTAWA - Canadians suffering from rare disorders will soon have speedier access to so-called "orphan drugs" under regulations introduced by the federal government.

The move reverses a 16-year-old Health Canada policy that prevented the unregulated drugs from being used to combat rare illnesses, or slowed their availability.

"Too often, Canadians dealing with rare diseases are faced with difficulties in accessing the information and medication they need," said Health Minister Leona Aglukkaq in announcing the changes.

"Our government will introduce a new approach that will better support the development and authorization of drugs for rare diseases."

Patients in the United States have had access to medications that treat rare disorders since passage of the U.S. Orphan Drug Act in 1983. Since then there have been more than 300 new drugs developed.

But Canadians could access only about half of those drugs, and in many cases several years later than in the U.S.

That means that only about two per cent of the population suffering from such rare disorders received treatments, said Dr. Kym Boycott, a neurogeneticist at the Children's Hospital of Eastern Ontario (CHEO).

Rare disorders are those considered to be seriously debilitating, chronic or even life-threatening that affect very small numbers of people.

There have been some 7,000 rare disorders identified in Canada, affecting anywhere from 1.8 to 2.8 million people.

To aid both patients and researchers in obtaining and sharing information, Health Canada is also launching a database called Orphanet to provide information about where patients can find treatments for rare diseases.

Dr. Paul Lasko with the CIHR Institute of Genetics says the database will help families get the treatments that they are often denied.

"Through this one user-friendly site, these families will now benefit from services such as specialized clinics, medical laboratories, clinical trials, and registries," said Lasko.

Under current policy, doctors can apply through a special access program to get drugs that aren't available in Canada to their patients. …

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