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Woman granted ‘miracle drug’ coverage after pleas in media, at Queen’s Park

Rebecca Van Fraassen (left) has been approved for Spinraza coverage, her family says. Tori Lacey (right) is still looking to be approved.
Rebecca Van Fraassen (left) has been approved for Spinraza coverage, her family says. Tori Lacey (right) is still looking to be approved. Tom Hayes / Global News

A 19-year-old woman with spinal muscular atrophy (SMA) has been granted eight months’ worth of provincial health coverage for an expensive “miracle drug”, her family says.

The news comes less than one month after their pleas for coverage were taken to Queen’s Park and profiled on Global News.

In a message sent to Global News on Friday, the family of Rebecca Van Fraassen said she has been approved for eight months of coverage for Spinraza, before they will have to reapply.

The family said they are “relieved” and “so happy.”

READ MORE: NDP MPP, patients with SMA call on Ontario to cover ‘miracle drug’ to treat rare disease

Spinraza, hailed by many as a “miracle drug” because of its ability to stop and even reverse the effects of the degenerative disease SMA, can cost up to $118,000 per dose, with six doses needed in the first year alone.

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On June 3, the Van Fraassen family, along with 21-year-old Tori Lacey who was profiled on Global News in April about her battle with SMA, pleaded for Spinraza coverage in the Queen’s Park media studio during an event hosted by NDP MPP Chris Glover.

“It’s a miracle drug. It’s a life preserver for the people drowning in this vicious disease,” said Doug Van Fraassen, Rebecca’s dad.

One day later, there was a standing ovation in the Ontario legislature for the Van Fraassen family, followed by a meeting with Christine Elliott, the minister of health.

“She said she’s going to do everything she can,” Theresa Van Frassen, Rebecca’s mother, told Global News after the meeting.

“I think it would be difficult to look someone in the eye and give them that promise and not follow through.”

Theresa added that she worked to get noticed at Queen’s Park for two and a half years and felt a renewed sense of hope after finally getting a meeting.

WATCH: (June 4) Renewed hope for provincial funding of ‘miracle drug’

Renewed hope for provincial funding of ‘miracle drug’
Renewed hope for provincial funding of ‘miracle drug’

Just over one week after that meeting, the Ford government announced that it would expand existing Spinraza coverage from just patients with Type 1 (severe) SMA, to include coverage for patients with Type 2 (intermediate) and Type 3 (milder) forms of the disease up until age 18.

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Those older than 18 who have either Type 2 or 3 SMA would have their cases analyzed on a case-by-case basis.

There were an estimated 30 SMA patients in the province who did not qualify for coverage prior to the change and it is unclear how many would still be excluded with the age cap.

While the news was welcomed by some, others, like Rebecca and Lacey, were initially excluded because they are over 18-years-old and do not have Type 1 SMA.

READ MORE: Ford government expands coverage for ‘miracle drug’ Spinraza, but with age cap

However, while heading to a family wedding on Friday, the Van Fraassen family got the news that Rebecca would be receiving coverage and expressed their joy in a message to Global.

Lacey, however, has not yet been approved for coverage and her application is still pending, the Van Fraassens said.

Meanwhile, elsewhere in the country, Saskatchewan and Quebec already fully fund the drug for all patients.

WATCH: Ontario SMA patient begs for her life

Ontario SMA patient begs for her life
Ontario SMA patient begs for her life

– With files from Tom Hayes