Ottawa, Alberta announce $162M rare disease drug agreement

Canada and Alberta Health Ministers Mark Holland and Adriana Lagrange announced a $162 million agreement to provide access to rare disease medicines at a news conference in Edmonton on Thursday, December 5, 2024.

Alberta Health Minister Adriana LaGrange announced that the federal and provincial governments have developed a list of these drugs to improve the approval process for rare disease drugs in the future and provide more benefits to patients.

Early approved drugs include Poteligeo for a type of cancer called Sézary syndrome, Oxlumo for type 1 hyperoxaluria, which can lead to kidney stones and kidney damage, and Epkinly to treat large B-cell lymphoma.

"We expect more drugs to be added to this list in the future," LaGrange added.

Under the National Strategy for Drugs for Rare Diseases, Alberta will receive about $54 million annually over three years for drugs, diagnostics and screening.

Mark Holland, Canada's health minister, said: "This is a very important step towards ensuring that people with rare diseases have access to the medicines they need and improving screening and treatment tools."

According to Canadian government estimates, one in 12 people live with a rare disease.

Last fiscal year, Alberta spent more than $130 million on rare disease drugs.

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