6 August, 2013 mcfadyena

FOR IMMEDIATE RELEASE – PC MLA Calls on Government to Fund Treatment for Rare Disease


PC MLA Calls on Government To Fund Treatment For Rare Disease

Life-Sustaining Treatment Required Immediately; Family Continues To Wait For Decision From Alberta Health

Stephen Khan, MLA for St. Albert, released his first public statement today about the case of 3 year-old Aleena Sadownyk. Sadownyk, a St. Albert resident, was recently diagnosed with MPS VI, a rare, progressive, and debilitating disease caused by an enzyme deficiency in the blood. She requires a life-sustaining treatment immediately to prevent irreversable symptoms from progressing. However, treatment cannot begin until Alberta Health renders its decision as to whether they will fund the expensive treatment or not. The treatment is already being funded in numerous provinces throughout the country, including BC, Saskatchewan, Quebec, and Ontario.

Khan released a statement on his Facebook page urging Alberta Health to quickly render “a positive decision for the Sadownyk family.” Khan notes that “Every day is an eternity for this young family, knowing that a treatment for this debilitating disease is at hand.” He acknowledges that other provinces are already funding treatment for the same disease.

Khan’s call for a quick decision from Alberta Health backs up Wildrose Health Critic Heather Forsyth in her own campaign for immediate action from Alberta Health. Forsyth has been publicly advocating on behalf of the Sadownyk family. On Friday, she wrote a letter to Health Minister Fred Horne asking him to “immediately reverse the denial of coverage under the Alberta Rare Diseases Drug Program or at the very least, provide temporary access to Naglazyme by immediately approving the STEDT application.” Forsyth notes in her letter to Horne that “major barriers thrown up in accessing this drug for Aleena” have caused delays that have left Aleena suseptable to “irreversible symptoms” of the very progressive disease.

While the drug in question isn’t yet approved by Health Canada, it’s official recognition as a legal medication for use in this country is imminent, perhaps only weeks away. It is already approved for use in many countries throughout the world, including the United States, the European Union and Austrailia. There are currently 7 children receiving the medication throughout Canada, all funded by provincial health care plans.

Andrew McFadyen, director of The Isaac Foundation, a charity that advocates on behalf of families affected by the disease, has grown frustrated with the delays and indecision. “There is ample evidence in this country and throughout the world as to the merits of this life-sustaining treatment. I’ve seen it personally in my son Isaac, where it has virtually halted the progression of the disease and has given him the opportunity of a normal life. It’s heartbreaking to know that while bureaurocrats are slowly make their way through the STEDT process – with no real indicaton or urgency, the disease is wreaking havoc on Aleena’s body. We know this works. We know other provinces already fund this treatment because they also know it works. Why Alberta Health is making this family wait to learn the fate of their daughter is beyond comprehension and it’s downright cruel.”

McFadyen adds that he is hopeful the public statement from Khan will prompt Minister Horne to take immediate action. “The Provincial government has the opportunity to do the right thing and ensure that Aleena receives the treatment she so desperately needs. It’s the role of government to protect and ensure fair and equitable access to Health Care for all Canadians, regardless of which Province they happen to live in. The Isaac Foundation joins Mr. Khan in calling on this government to take action and save the life of this child. She can’t afford to wait.”

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For more information about this topic, or to schedule an interview to discuss, please call Andrew at 613-328-9136 or email Andrew at mcfadyena@me.com.

Stephen Khan’s full statement can be found here.

Heather Forsyth’s full letter to Minister Horne can be found here.

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