Province gives family facing $2.8M drug bill a glimmer of hope

A Pikwàkanagàn First Nation family can now apply for government help to cover a $2.8-million drug that could change the course of their 14-month-old son's life.

"It just gives me this amazing feeling inside that they're willing to potentially help us out and give him what he needs," said Kevin Verch's mother, Dana Pearce, on Friday.

The toddler was diagnosed with spinal muscular atrophy type 2, or SMA2, 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.

• Family pinning hopes on fundraisers for toddler's $2.8M treatment

The family believes their son's best shot at avoiding the most severe effects of SMA2 is a single dose of Zolgensma, which costs $2.8 million. The drug effectively replaces the missing or malfunctioning gene that causes SMA.

Verch's doctor received a letter from the Ministry of Health on Friday morning saying patients who require the gene therapy can now apply under Ontario's Exceptional Access Program on a case-by-case basis. The letter, shared with CBC, acknowledges patients like Verch are facing "unique circumstances" given the astronomically high cost of the drug. 

Drug lottery cancelled

Zolgensma should be administered to patients as soon as possible after they're diagnosed with SMA. Pearce said her son requires a dose before he turns two in November.

Until mid-December 2020, families could apply for a free dose from the drug maker's managed access program. When Health Canada approved the drug on Dec. 16, 2020, however, Novartis ended the lottery program for residents in Canada.

It gives us a lot of hope, and we're glad that they're starting to realize that there are quite a few babies in Canada that are struggling with this.- Dana Pearce, Kevin Verch's mother

That left families on their own to figure out how to pay for the drug themselves as provinces and territories finalize details around coverage.

"It gives us a lot of hope, and we're glad that they're starting to realize that there are quite a few babies in Canada that are struggling with this," said Pearce.

'A hope, not a guarantee'

The boy's family started a GoFundMe page to raise money for his treatment, and plans to continue raising funds in case Ontario denies the family's application. 

"This is just a hope, not a guarantee," Pearce said. 

If the province agrees to pay for the drug, the family is considering using the money they've raised to cover travel costs for Verch's appointments at CHEO, as well as any mobility devices he may require in the future. They may also donate some of the money to other families dealing with SMA. 

Pearce and Verch's father are both in their early 20s, and both earn minimum wage.

As of Friday afternoon, the family's GoFundMe page has raised more than $81,000 toward their goal of $2.8 million.