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By Shane Clausing

Zolgensma

Zolgensma added to Rare Diseases Drug Coverage Program

Dec 1, 2021 | 2:27 PM

The Alberta government has added Zolgensma to the Rare Diseases Drug Coverage Program.

Zolgensma is known as one of the most expensive drugs in the world and costs $2.8 million for it to be purchased privately. It is a one-time gene therapy used to treat Spinal Muscular Atrophy (SMA).

Spinal Muscular Atrophy is a rare neuromuscular disorder and results in the loss of motor neurons and progressive muscle wasting. The disease makes it tough for children to grow their muscles as they get older.

The drug was approved for use in Canada back in December of 2020 and was provided by the Alberta government from January until June of 2021.

SMA approval back last December was a critical step of Fairview’s Might Max Sych to getting the treatment he needed, so he can live a more normal life. The Alberta government provided the drug from January to June of 2021 and it was given out on a case-by-case basis.

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“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,” said Minister of Health Jason Copping.

“Treating spinal muscular atrophy early provides children with important developmental support and the best possible health outcomes.”

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.