Ottawa, Alberta announce $162M rare disease drug agreement

New money for drugs for rare diseases Alberta and the federal government have come to an agreement to provide money for drugs for rare diseases. Chelan Skulski reports.

Alberta has entered a $162-million agreement with the federal government to provide access to drugs for rare diseases.

For months, the two governments have been working on this, as well as a list of such drugs to "help inform future rare disease drug approvals to increase benefits for all rare disease patients," Alberta's health minister, Adriana LaGrange, said during a news conference in Edmonton on Thursday.

The first drugs approved to be provided are Poteligeo, for a type of cancer known as Sézary syndrome; Oxlumo, for hyperoxaluria type 1, which can lead to kidney stones and kidney damage; and Epkinly for the treatment of large B-cell lymphoma.

"And we expect to add even more drugs from the agreed-upon list as they become available," LaGrange said.

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

As drugs to treat rare diseases can cause between $250,000 to $1 million per patient, the plan could potentially help thousands of Albertans, according to LaGrange.

"This is such an important step in making sure that the folks who are diagnosed with a rare disease get access to the medication they need and we have the right screening and treatment tools overall," federal Health Minister Mark Holland said, calling the present an opportunity to transform Canada's health-care system from one that is illness-based to prevention-based.

The Canadian government estimates one in 12 people live with a rare disease.

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

The agreement with Alberta is the third such agreement Ottawa has signed, after B.C. and Newfoundland and Labrador.

The National Strategy for Drugs for Rare Diseases, created in 2023, will disperse up to $1.4 billion over three years to the provinces and territories.