EDMONTON (660 NEWS) – The Alberta government will start providing funds for an extremely expensive drug used to treat a rare disorder
The province is working with a pharmaceutical company to provide more access to Zolgensma, which can cost about $2 million dollars per treatment
Health Minister Tyler Shandro said they will give funding on a case by case basis, while reviews of the drug are ongoing
“For kids whose treatment eligibility may be at risk while waiting for the drug review and the approval processes to be completed. I’m very aware of the urgency of making this treatment available and pleased that we are able to provide this funding.”
Zolgensma is used to treat Spinal Muscular Atrophy (SMA), a rare motor neuron disorder that can affect the muscles used for head and neck control, sitting, crawling, walking and swallowing.
The cost of the drug was brought to light recently as an Alberta family raised money online to afford the treatment.
— Courtney Theriault (@cspotweet) January 27, 2021
“We are so thrilled about the funding approval in Alberta for Zolgensma,” said Lana Bernadin, whose son Kaysen received the treatment in December. “This is huge for the SMA community and we feel a great sense of joy that no other family will be faced with raising money for the world’s most expensive medication.”
Zolgensma was approved by Health Canada last December and a review by the Canadian Agency for Drugs and Technologies in Health is underway.