The mother of two-year-old Kaysen Martin says it’s unrealistic for her family to raise the $2.8 million needed for her son’s drug coverage.
The GoFundMe for Martin has nearly reached $1.1 million dollars, and for now his mom Lana Bernardin says she will hold on to the money, but fundraising is not her goal.
She says she wants the Alberta government to cover the drug for everyone who needs it.
Martin was diagnosed with spinal muscular atrophy Type 1 (SMA 1) at eight months old. The disease attacks motor neurons, causing his muscles to weaken over time.
About one in 6,000 babies are born with SMA and most children with SMA 1 do not live to see their second birthdays.
Zolgensma is a new gene therapy that replaces the dysfunctional gene causing SMA. It costs $2.8 million and is not approved for use in Canada yet.
“I’m feeling emotionally frustrated with the whole process. We were told we would get an answer by Kaysen’s birthday,” Bernardin said.
But July 17th came and went with no update. Bernardin said the family inquired with the province and was told a bit more time was needed and more information would be coming on Tuesday (July 21), but that also did not happen.
“Wednesday morning, we were told that the pan-Canadian Pharmaceutical Alliance (pCPA) is in negotiations with the drug company Novartis,” she explained.
“So it’s not a matter of if, it’s a matter of price. In these negotiations, where does that leave Kaysen?”
Bernardin, fighting back tears, said the family is dealing with a lot of unknowns and uncertainty.
“I feel like our family and our story and Kaysen is being used as a bargaining tool. And I’m just not okay with that,” she said.
“It’s just not fair that these families are trying to raise $3 million to give their children a better quality of life.”
Bernardin said with Canada’s universal healthcare, this shouldn’t happen.
“I want it to end. I want our life to go back to normal and be going to the park instead of doing this. It’s been hard.”
Tom Kmiec, Member of Parliament for Calgary Shepard, came to meet Martin and show his support for the cause.
Kmiec previously helped petition the province to fund Spinraza, a treatment Martin gets every four months — but it’s not a cure.
He said with Spinraza, the province bypassed the decision of the pCPA and went directly to the manufacturer to make a deal.
“The provinces have this organization so they can get bulk purchase pricing. This stuff doesn’t work for a rare disease drug, where you have a handful of patients in the province. You’re not going to have bulk pricing.”
Kmiec lost his own daughter from a rare disease. He said if Martin doesn’t get the drug, something to consider is the long-term cumulative costs of hospitalization.
“I’m calling on the Alberta government to do the right thing, do the compassionate thing. Fund this drug,” Kmiec said.
Steve Buick, a spokesperson for Health Minister Tyler Shandro’s office, sent Global News a statement on Monday.
“We’re continuing to work with the family and the company on a potential solution, but it’s complex because it’s an exceptional case, and we don’t have a decision yet.
“We’re in touch with the family frequently and we’ve assured them that we’re trying to get this done.”
On Friday, he said that statement still stood.
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