Published:
By Jeff Gard, Northumberland Today
Wednesday, August 7, 2013 1:43:27 EDT PM
Andrew McFadyen is ready for the launch of Project One Million. JEFF GARD/Northumberland TodayPrint
CAMPBELLFORD - For a Campbellford father, this is just another fight for funding, albeit with a different province.
Andrew McFadyen is lobbying Alberta Health to approve life-sustaining treatment for three-year-old Aleena Sadownyk, who was recently diagnosed with the rare enzyme deficiency MPS VI (Maroteaux-Lamy Syndrome). Those affected lack an enzyme in their blood that breaks down cellular waste in the body called glycosaminoglycan (GAG), which builds up in the bones, tissues, organs and muscles. It can lead to devastating symptoms such as heart and airway disease, corneal clouding, stiffening of the joints, shortened stature and premature death.
Treatment — an Enzyme Replacement Therapy called Naglazyme — can range from $300,000 for a small individual to $1 million for a young adult per year. There are currently nine children suffering from MPS VI in Canada and about 1,100 cases worldwide.
McFadyen and his wife Ellen’s nine-year-old son Isaac suffers from MPS VI, but he has been receiving treatment on a weekly basis for seven years at The Hospital for Sick Children in Toronto after he was original denied funding. The McFadyens lobbied and they won.
Since that time, the family has also successfully lobbied for funding for another Ontario boy, Jasper More, in 2011 and a Saskatchewan girl, Violet Revet, in 2012.
Now the focus is on the St. Albert, Alberta toddler Aleena Sadownyk, who was denied funding by Alberta Health through the Alberta Rare Diseases Funding Program. A second application through the Short Term Exceptional Drug Therapy program is currently being reviewed, McFadyen said.
“It’s awful… the fact this has to continue to play out the same way every time a child gets diagnosed in a new province,” McFadyen said, while noting it spotlights Canada’s need for an Orphan Drug Policy. “The little girl’s family has to wait (for the decision) and it’s not right. It’s tough reliving this experience, but you empathize with the family.”
His advocacy work includes checking in with Alberta Health several times per day, ensuring the ministry has received all of the information it needs to make a proper decision and know that precedent has been set. In addition, he works with opposition health critics and prepares news releases.
McFadyen said when a child was diagnosed with MPS VI in Quebec, that province followed precedent already set by Isaac and subsequent cases. He hopes Alberta will do the same.
These funding fights engender “mixed emotions” in McFadyen, who used the words “angry” and “stressful” to describe the process.
“This takes over everything in life but it’s a small sacrifice for a little girl and her family,” McFadyen said. “It’s rewarding when success comes, knowing what it means for the family and the kids.”
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