edmonton family wants ahs to cover $2.8 million drug to treat toddler's rare motor disease

by dylan shortan edmonton family is pushing for alberta health services to cover the costs of a multi-million dollar drug that could change their son’s life.kaysen martin was diagnosed close to a year ago with spinal muscular atrophy type 1 (sma-1), a motor neuron disease that makes it difficult to move voluntary muscles used for swallowing, walking, crawling, lung support and supporting the head. one in 6,000 children are born with the condition.martin’s family has received all needed approvals for him to receive a zolgensma infusion, a gene therapy that would give the toddler more motor function, allowing him to swallow or breathe on his own and even roll over. but the drug, intended as a one-time treatment, costs $2.8 million.lana bernardin, his mother, is lobbying for ahs to cover the cost but martin needs it before his second birthday on july 17, because the drug is only approved for use in children under two.“i’m not hopeful, i know it’s a really slim chance,” said bernardin. “but as a mother, i need to do everything in my power to at least try.”close to 70 per cent of children with sma-1 do not live past their second birthday and more than 80 per cent do not live to see their fourth birthday.the fight for ahs coverage comes after the family already worked to get martin entered into a lottery put on by the drug’s manufacturer, in which 100 doses of zolgensma was made available in countries where the drug is not yet approved, including canada. bernardin said her son’s name was not drawn, and the next raffle is scheduled after his second birthday.despite health canada not yet approving zolgensma, bernardin said she has received permission for her son to receive the drug. she has also found a doctor in calgary who would administer it for them.“through that lottery program, we had to apply for a special access program,” said bernardin.ahs spokesman kerry williamson said alberta health oversees drug funding concerns.health minister tyler shandro said his heart goes out to martin and his family but  the government’s options are limited because zolgensma is not approved by health canada.“i recognize the challenges this family is facing and their wish to explore all available options for their son as they face this terrible disease,” said shandro. “my department and alberta health services are reviewing the family’s request.”bernardin said an employee from shandro’s office has reached out to the family to set up a meeting but she hasn’t heard back since.she said her son has received seven shots of spinraza, another drug used to treat sma-1, which costs $125,000 per shot and must be used for life. she said she receives some coverage for spinraza through alberta blue cross.“some days i feel like i’m bipolar because it’s such an emotional roller coaster,” said bernardin. “i need $2.8 million.”dshort@postmedia.comdon’t miss the latest on covid-19, reopening and life. subscribe to healthing’s daily newsletter coming out of covid.