3 August, 2013 mcfadyena

Parents want province to fund treatment for child's rare condition

Aleena Sadowynk, 3, has a rare enzyme deficiency CBC News

Posted: Aug 2, 2013 9:52 PM MT

Last Updated: Aug 2, 2013 9:50 PM MT

A couple from St. Albert is trying to get Alberta Health to cover the expensive medication to treat their daughter’s rare medical disorder.

Aleena Sadownyk, 3, suffers from the enzyme deficiency MPS VI, a condition with fewer than ten cases in Canada.

The MPS VI is treated with an drug called Naglazyme, which can cost anywhere from $300,000 to $1 million each year.

Aleena’s parents Dane and Laura Sadownyk applied for funding months ago but were turned down because because Health Canada hadn’t given Naglazyme general market approval.

They are now awaiting a reply from Alberta Health after applying under the Short Term Exceptional Drug Therapy Program.

“We’re not taking not taking no as an answer. If we have to contact every person out there to tweet, Facebook, email, phone, [Health] Minister [Fred] Horne, we’ll do that, ” Laura Sadownyk said.

“We have lots of people supporting us and we need the support of the public.”

“It’s a child’s life. That’s the bottom line,” Dane Sadownyk said. “She deserves a future like any other child should and that’s all we want for her.”

Aleena’s case is now being reviewed by medical experts who will determine whether the drug can be funded.

In a statement sent to CBC News, Horne suggested that the delay has been caused by the fact Naglazyme doesn’t have general market approval from Health Canada.

“Because it doesn’t have federal approval, the options for funding this drug are different than for some other drugs,” he said.

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