The family of a Pikwàkanagàn First Nation toddler diagnosed with a rare genetic disorder says the federal government has agreed to pay the full cost of a life-changing drug for the boy.
Fourteen-month-old Kevin Verch was diagnosed with spinal muscular atrophy type 2, or SMA2, at CHEO in Ottawa on Boxing Day. The condition causes muscles to weaken over time, and without treatment can prevent patients from walking, feeding themselves or holding their heads up.
Kevin’s mother, 20-year-old Dana Pearce, said her son’s best shot at preventing some of the most debilitating aspects of his condition is a single dose of the drug Zolgensma, at a cost of $2.8 million, before he turns two. The drug replaces the missing or broken gene that causes SMA.
It was a miracle, that’s for sure. We were all crying with tears of joy. We didn’t expect this to happen so quickly.– Dana Pearce, Kevin Verch’s mother
Pearce was elated to know her child will receive the drug at no cost to her family under Jordan’s Principle. The nearly $2-billion program provides funding to First Nations children who need timely access to health, social and education services.
“It was a miracle, that’s for sure. We were all crying with tears of joy. We didn’t expect this to happen so quickly,” said Pearce on Monday.
Family to refund donors
The family had created a GoFundMe page in early January after learning about Zolgensma, but once they got confirmation from Indigenous Services Canada that Verch would be covered, the family suspended the campaign, said Pearce.
She plans to refund all $85,825 raised once Verch gets his shot, which the family hopes will be sometime in February.
“It’s just easier on our end,” Pearce said. “And if they want to donate to another child in need, they can.”
Before Health Canada approved Zolgensma in mid-December, maker Novartis had offered a lottery program for Canadians to get free doses. After Zolgensma was approved in Canada, however, the pharmaceutical company withdrew the managed access program, leaving Canadian families with few alternatives.
Since Verch’s story came to light, the Ontario government said it will consider paying for the drug on a case-by-case basis until a formal decision is made about ongoing coverage of the costly drug.
CBC reached out to Indigenous Services Canada earlier this month, but the federal government declined to comment on Verch’s case because of privacy concerns.