By Emily Mertz Global News
A St. Albert family is appealing to the Alberta Government to help save their daughter’s life as she battles a rare disease, Friday, August, 2, 2013. Supplied, The ISSAC Foundation
EDMONTON – The PC MLA for St. Albert, Stephen Khan, is urging Alberta Health to move quickly in making a “positive decision” for Aleena Sadownyk, a three-year-old who suffers a rare and debilitating disease.
The little girl was recently diagnosed with Matoeaux-Lamy Syndrome, also know as ‘MPS’.
Aleena lacks the enzyme needed to break down waste in her body, so it builds up on organs, bones, and muscles. The disease will cut her life short if she doesn’t get treatment.
However, the drug Aleena needs – Naglazyme – isn’t approved in Canada, so her family is appealing to the province to provide funding for the costly treatment.
“As many of you have recently learned, a St. Albert family is seeking assistance from Alberta Health Services (AHS) to cover medication treatment for their three year old daughter’s rare medical condition. Aleena Sadownyk is an adorable three year old girl, who suffers from a potentially fatal and very rare enzyme deficiency, known as MPS VI.
“MPS VI has proven to be treatable with a drug called Naglazyme. This drug, unfortunately, has not been approved for use in Canada. The Sadownyk family is currently seeking funding for the treatment from AHS, through the Province of 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. 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.
“We remain hopeful that we will have a successful resolution for Aleena and her family. In the meantime, our thoughts and prayers go out to Aleena, her family, friends and supporters.”
The treatment costs $300,000 a year for a person Aleena’s age.
On Friday, Health Minister Fred Horne sent a statement to Global News:
“My heart goes out to the Sadownyk family. I know they want to do everything they can to help their daughter. The family has contacted my office recently and were immediately put in touch with appropriate officials who could assist in supporting the family in making a funding request through appropriate programs.
As things stand, Naglazyme has not yet received general market approval through Health Canada. Because it doesn’t have federal approval, the options for funding this drug are different than for some other drugs. Albertans who need access to high-cost drug therapies not already covered by provincial programs may explore funding options through the Short-term Exceptional Drug Therapy Program. That program relies on medical experts to assess whether a specific drug will be safe and effective for a specific patient. It’s done on a case-by-case basis, so it can take a patient’s needs and particular health condition into account.
“As a politician, I don’t get directly involved in assessing which drugs would be funded through that process – and appropriately leave that assessment to medical experts. Department officials will continue to support the application process, a clinical review is underway now and I understand we expect a response soon.”
Wildrose Health Critic Heather Forsyth has written a letter to the minister asking him to fund Aleena’s treatment.
“Every day this child waits her condition deteriorates. We need to help her,” says Forsyth.