Ford government expands coverage for 'miracle drug' Spinraza, but with age cap

WATCH ABOVE: Patients with spinal muscular atrophy have been fighting for access to a miracle drug called Spinraza. But as Tom Hayes reports, the expanded help may not be coming to those who led the fight.

The Ontario government has announced it will cover the costs of a “miracle drug” used to treat spinal muscular atrophy (SMA) for Ontarians with all forms of the disease up until age 18.

In a statement, Health Minister Christine Elliott said coverage is being expanded from the existing Type 1 SMA patients to include Type 2 and 3 for children and adolescents.

Elliott said other patients with Type 2 and 3 SMA may be considered for coverage on a case-by-case basis.

There were an estimated 30 SMA patients in the province who did not qualify for coverage prior to this announcement. It is unclear how many will still be excluded with the age cap.

Each dose of Spinraza costs around $118,000 and six doses are needed in just the first year of treatment.


READ MORE:
Families of patients with SMA meet with Ontario health minister, hope ‘miracle drug’ will get funded

It has been hailed as a “miracle drug” by advocates given its effectiveness at treating SMA, sometimes stopping and even reversing effects of the degenerative disease.

“After several months of working with the manufacturer, we welcome today’s decision between the Executive Officer of Ontario Public Drug Programs and (biotech company) BioGen to expand coverage for Spinraza,” Elliott said.

“Young Ontarians with rare diseases deserve every opportunity to enjoy healthy and happy childhoods.”

The news comes just one week after families of patients with SMA met with Elliott at Queen’s Park in a bid to convince the minister to change the government policy on the issue.

Among the advocates who went to Queen’s Park was 21-year-old Tori Lacey, whom Global News profiled earlier this year in her fight to get Spinraza coverage.


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

Lacey, who suffers from Type 2 SMA, won’t automatically be covered as a result of this announcement, however.

Given her age, she would need special consideration in order to be covered.

Advocates have pointed out that Saskatchewan and Quebec already fully fund the drug for all patients.

When asked about that last week, Elliott responded, “We have a process that we have to follow in Ontario where we have to be fiscally responsible but we also want to help families.”

WATCH: (April 3) Miracle drug access denied for SMA patient. Tom Hayes reports.

— With files from Tom Hayes and Jessica Patton

© 2019 Global News, a division of Corus Entertainment Inc.

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