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e-2444 (Health)

Initiated by Monika Wyrzykowska from Waterloo, Ontario

Original language of petition: English

Petition to the Minister of Health

  • Spinal muscular atrophy (SMA) is a rare disease that attacks the body’s muscles and affects one out of every 8,000 to 10,000 people worldwide;
  • Type 1 specifically is the most severe, diagnosed prior to age one;
  • There is a drug, Spinraza, that alleviates symptoms of SMA to an extent but is not a cure and requires ongoing and expensive medication for life;
  • A possible cure, a gene therapy called Zolgensma, produced by the pharmaceutical company Novartis, is approved for sale in the United States;
  • The cost of a one-time dose is a prohibitive $2.8 million and therefore completely out of reach for a middle class family;
  • The federal government committed in 2019 to work with provinces and territories to develop a national strategy for high-cost drugs for rare diseases;
  • Health Canada's Special Access Program “may provide access to a drugs (for serious or life-threatening conditions) that cannot otherwise be sold or distributed in Canada”; and
  • The program’s guidelines require that “conventional therapies have been considered and ruled out, have failed, are unsuitable, and/or unavailable” in order to be eligible.
We, the undersigned, citizens and residents of Canada, call upon the Minister of Health to urgently and immediately review and revise the eligibility criteria for Health Canada’s Special Access program so that infants taking medications to manage symptoms of SMA Type 1 are not deemed ineligible from applying for life-saving drugs, thus giving the chance at a possible cure from a life-threatening rare disease.
Open for signature
February 24, 2020, at 3:40 p.m. (EDT)
Closed for signature
March 25, 2020, at 3:40 p.m. (EDT)
Photo - Raj Saini
Kitchener Centre
Liberal Caucus
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