The Alberta government is trying to make a difference for children battling with spinal muscular atrophy.
In an announcement Thursday, Alberta Minister of Health Tyler Shandro said the province is partnering with Novartis Pharmaceuticals Canada Inc., to provide access to Zologensma for patients with SMA.
Zologensma is a drug that helps treat the disease and was approved by Canada in December.
SMA is a rare motor neuron disorder that affects muscles used for head and neck control, sitting crawling, walking and swallowing – it also affects a small number of children and adults in Canada – impacting about 1 in 6,000 babies who are born.
Funding from the province will be approved on a case-by-case basis.
“Access to this treatment will mean a world of difference for these few brave children and their families,” he said.
“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.”
Zolgensma is administered by IV, to replace a missing or faulty gene and in the U.S., a one-time treatment costs US$2.125 million.
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,” said Dr. Jean K. Mah, division of pediatric neurology, Alberta Children’s Hospital.
Susi Vander Wyk, executive director for Cure SMA Canada, said the decision will help put many families at ease who are facing the life-altering consequences of this disease.
“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,” she said.
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