Published:
August 6, 2013. 3:59 pm • Section: Capital Notebook, Uncategorized
Posted by: Sarah O’Donnell
St. Albert’s Progressive Conservative MLA said Tuesday Alberta health officials should move quickly fund treatment for a three-year-old girl suffering from a rare medical condition.
Aleena Sadownyk’s family shared her story, and their push to get the provincial government to fund the expensive treatment that could keep the symptoms of Maroteaux-Lamy Syndrome at bay, last week. My Journal colleague Jodie Sinnema explained how Aleena is missing a crucial enzyme called glycosaminoglycan, which breaks down cellular waste in her body. Instead, the waste builds up, “restricting her movements, clouding her eyesight and damaging her organs. Without treatment, her life expectancy will dwindle.”
The St. Albert family has asked the province to approve funding for a drug called Naglazyme, which should help treat the condition.
On his Facebook page Tuesday, St. Albert MLA Stephen Khan said Alberta Health Services should approve funding through Alberta’s short term exceptional drug therapy program.
“As the MLA for St. Albert, I fully endorse the Sadownyk’s request for funding support from AHS,” Khan said. “My office and I have been advocating and working with the Minister of Health’s office on this issue since early July, when we first learned of the Sadownyk family’s situation.
“While I respect there is a process to follow for the Short Term Exceptional Drug Therapy Program review, I urge AHS to move quickly in rendering a positive decision for the Sadownyk family. Every day is an eternity for this young family, all the while knowing that a treatment for this debilitating disease is at hand. Currently four other provinces — Quebec, Ontario, Saskatchewan and British Columbia — have all made exceptions for families in need of this specific treatment.”
With his comments, Khan joins Wildrose health critic Heather Forsyth, MLA for Calgary-Fish Creek, who called on Health minister Fred Horne to immediately approve the funding for Aleena last Friday.
Alberta Health officials said Tuesday a clinical review by medical experts is underway. One of the issues is that Health Canada has yet to approve sale of the drug in Canada. “We’re not going to get involved to pressure them to rush that clinical review. We anticipate a response soon,” Alberta Health spokesman John Muir said Tuesday.
