Alberta

Interim access to Zolgensma for Alberta children

News Release

Interim access to Zolgensma for Alberta children

Families of Alberta children suffering from spinal muscular atrophy (SMA) may now be eligible to receive funding for gene replacement therapy treatment.

Alberta’s government is working with Novartis Pharmaceuticals Canada Inc. to provide interim patient access to Zolgensma.

SMA is a rare and progressive genetic disorder that causes muscle wasting. Alberta children with SMA and who may become ineligible for the treatment while waiting for the final approval processes to be completed, will be considered for funding on a case-by-case basis.

“Access to this treatment will mean a world of difference for these few brave children and their families. Alberta’s government recognizes the urgency families are experiencing in getting treatment for their children diagnosed with this disease and we are pleased to be able to provide interim funding to help them out.”Tyler Shandro, Minister of Health

“We are so thrilled about the funding approval in Alberta for Zolgensma. This is huge for the SMA community and we feel a great sense of joy that no other family will be faced with raising money for the world’s most expensive medication.”Lana Bernardin, mother of Kaysen

“Thank you to the Alberta government for making a life-saving decision that will change the course of this devastating disease. We are thrilled knowing the impact of this decision on the patients and their families.”Susi Vander Wyk, executive director, Cure SMA Canada

Specialist physicians who provide care to children with spinal muscular atrophy are able to submit an application on behalf of their patients for coverage to be considered.

“This is a positive step forward in providing better care for young children with spinal muscular atrophy and wonderful news for those families who will have access to this gene therapy.”Dr. Jean K. Mah, Division of Pediatric Neurology, Alberta Children’s Hospital

The Government of Alberta will continue working with the Canadian Agency for Drugs and Technologies in Health and the pan-Canadian Pharmaceutical Alliance (pCPA) to complete the standard drug review and negotiation processes, and to reach a long-term agreement for access to the drug for other children and families.

“Novartis is proud to share Alberta’s commitment to the SMA community. We feel privileged to be a partner with the province to provide access to Zolgensma during this interim period and address the urgent treatment needs of children affected by this devastating disease.”Andrea Marazzi, country head, Novartis Pharmaceuticals Canada

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 was approved by Health Canada in December 2020; a review by the Canadian Agency for Drugs and Technologies in Health is underway.
  • Zolgensma is administered by intravenous (IV) infusion to replace a missing or faulty gene.
  • A one-time treatment of Zolgensma costs US$2.125 million.

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