The federal government is seeking input from people who are affected by rare diseases.
Numerous virtual town halls have been scheduled for the coming weeks that aim to inform the federal government’s strategy for high-cost drugs for rare diseases.
Anthony Rota, member of parliament for Nipissing-Timiskaming, is encouraging his constituents to participate in the conversation.
“I’ve had a number of people with rare diseases come to my office saying they’re having a hard time paying for their medications,” Rota said. “A lot of Canadians aren’t affected by rare diseases but when it does affect you, it affects your family and your circle of friends.”
A rare disease is a medical condition that affects a small percentage of the population, making treatment options more expensive.
Medication for rare diseases can cost from $100,000 annually to $2 million, according to the federal government.
One in 12 Canadians is affected by a rare disease, with two-thirds of those in children, according to the Canadian Organization for Rare Disorders.
The federal government has already committed over $1 billion beginning in 2022 to help Canadians pay for high-priced medication for rare diseases.
Rota says the series of town halls will be important for shaping how that money is spent.
“To me, it’s important that people who actually have the experience, whether it’s the person with the illness or their families, can have the input so they can show exactly what it is they see happen and how it might impact their lives,” he said.
The town halls begin on February 9. Participants can submit questions beforehand or take in the town hall virtually.
