Interim access to Zolgensma was provided by Alberta’s government from January to June 2021 while national drug review, approval and price negotiation processes were being completed. The pan-Canadian Pharmaceutical Alliance subsequently reached a long-term pricing agreement with the manufacturer in October.

“We are extremely pleased that a long-term agreement with the manufacturer has been reached and we are now able to provide this life-changing treatment to Alberta children on a permanent basis. Treating spinal muscular atrophy early provides children with important developmental support and the best possible health outcomes.”

Jason Copping, Minister of Health

“Muscular Dystrophy Canada is pleased this gene therapy will be offered to children in Alberta who are diagnosed with spinal muscular atrophy. Through early diagnosis and treatment, we can give these children a better start and providing access to this therapy is an important part of that care.”

Stacey Lintern, CEO, Muscular Dystrophy Canada

*“We are thrilled Zolgensma is now a permanent addition to the treatment options available to children with spinal muscular atrophy. Families can know with certainty this important therapy is available and accessible in our province.”

Susi Vander Wyk, executive director, Cure SMA Canada

Alberta’s government also provides coverage for the drug Spinraza for patients with spinal muscular atrophy who meet the eligibility criteria through the Alberta Drug Benefit List.

In addition, work is underway to pilot a newborn screening test for spinal muscular atrophy and subsequently incorporate the test into Alberta’s Newborn Metabolic Screening Program.

Quick facts

  • Spinal muscular atrophy or SMA is a rare motor neuron disorder that can affect the muscles used for head and neck control, sitting, crawling, walking and swallowing.
  • Zolgensma is administered by intravenous infusion to replace a missing or faulty gene.
  • A one-time treatment of Zolgensma costs $2.91 million Canadian.
  • The Rare Diseases Drug Coverage Program is administered by Alberta Health Services on behalf of Alberta’s government.

*This version has been updated from the original to include a quote from Cure SMA Canada.