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e-2868 (Health)

E-petition
Initiated by J. Alex Cornett from Ottawa, Ontario

Original language of petition: English

Petition to the Minister of Health

Whereas:
  • Spinal muscular atrophy is a rare disease impacting 1 in 6,000-10,000 people (majority children) that progressively reduces their ability to move, breathe, and swallow;
  • The existing treatment, Spinraza, slows but does not prevent serious declines in functioning, is an invasive treatment administered via spinal injection three times per year for life (which carries its own risks), and costs over $6.7 million by age 18;
  • Zolgensma, a gene therapy that is almost a cure when provided early (replacing the missing gene), is approved in Europe, Japan, USA, and is currently undergoing Health Canada, INESSS, and CADTH review with an anticipated decision on December 2, 2020, after which the pan-Canadian Pharmaceutical Alliance will begin pricing negotiations, which takes up to 12 months;
  • Zolgensma is a one-time treatment that currently costs $2.8 million, making it unaffordable for everyday Canadians;
  • Zolgensma must be administered before the age of two for safety;
  • As of September 2020, there are eight children across Canada who must receive Zolgensma within the next 1-11 months (before they turn two) or they will no longer be eligible for the treatment;
  • Many of these infants have permission to administer Zolgensma through Health Canada’s Special Access Programme but simply cannot afford to purchase it; and
  • The federal government has committed to work with provinces and territories to support high-cost treatments for rare diseases.
We, the undersigned, citizens and residents of Canada, call upon the Minister of Health to immediately approve Zolgensma and financially and otherwise support all health jurisdictions to make this treatment affordable immediately for all children who need it.
Open for signature
October 7, 2020, at 12:31 p.m. (EDT)
Closed for signature
November 6, 2020, at 12:31 p.m. (EDT)
Photo - Anita Vandenbeld
Ottawa West—Nepean
Liberal Caucus
Ontario
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