A St. Albert family’s struggle to get the province to pay for drugs to treat their daughter’s rare disease has ended successfully.
"Today, for the first time in a long while, I feel like I can come up for air," said Dane Sadowynk, whose 3-year-old daughter Aleena suffers from MPS VI, an enzyme deficiency.
The rare disorder affects only nine children in Canada. It is treated with Naglazyme, a drug that can cost between $300,000 and $1 million every year.
Sadowynk and his wife applied for funding from Alberta Health Services months ago, but was turned down, because the drug didn’t get general market approval through Health Canada.
However, early Monday morning, the family got a call while attending a conference on the disease in Connecticut.
"Our family was just getting ready for some breakfast, when we received a phone call ... said it was approved," Sadowynk said.
He says the company that makes the drug is now training nurses to administer it to Aleena.
Program deals with rare diseases
The funding will come from the province’s Short Term Exceptional Drug Therapy Program.
Minister of Health Fred Horne says the program is set up for rare diseases that aren't covered by the provincial health care system.
"It is a unique case," he said.
"This is a drug that isn’t even licensed for sale in Canada."
Horne says it took time to do a clinical evaluation to see if the treatment was eligible under the program and that the media attention surrounding Aleena's case didn't factor into the approval.
He adds that while the drug will be covered in this case, he isn't sure if the drug will be approved by Health Canada.