CALGARY, AB (August 2, 2013): The PC government needs to immediately commit to funding a life-saving drug for a three-year-old Alberta girl with an extremely rare, life-threatening disease, Wildrose Health Critic Heather Forsyth said today.
The girl, Aleena Sadownyk of St. Albert, was diagnosed in April with MPS VI, an enzyme deficiency disease that occurs in one out of approximately 250,000 to 600,000 newborn babies. If left untreated, it will cause life-threatening complications including heart problems, breathing difficulties and skeletal deformations.
The treatment, Naglazyme, has proven successful in other patients suffering from MPS VI, including seven other Canadian children who are currently receiving this treatment in neighbouring provinces. It costs approximately $300,000 annually. BC, Saskatchewan, Ontario and Quebec have all agreed to fund Naglazyme for MPS VI patients.
Today, Forsyth sent a letter to Health Minister Fred Horne formally requesting he approve funding for Aleena’s treatment.
“This treatment is Aleena’s only hope,” Forsyth said. “Today, I join with the Sadownyk family in making this simple but critical request of the Alberta government: Please fund this life-saving treatment for Aleena.”
Forsyth said the Sadownyk family has attempted to raise Aleena’s extraordinary case with their local MLA and with Horne but has had little success. The government has already denied the family’s first funding request through the Alberta Rare Diseases Funding Program. A second request through the Short Term Exceptional Drug Therapy Program has received no response.
“This family is desperate to save their daughter’s life,” Forsyth said. “Aleena needs this treatment and she needs it now. Every day that access is delayed, is another day for irreversible complications to take hold. Other provinces have stepped up when their children needed this treatment. It’s time for Alberta to do the same.”
Heather Forsyth was first elected on June 15, 1993 as the MLA for Calgary-Fish Creek, and acts as the Wildrose Health critic.