Alberta teen pleads for $500,000 drug therapy
17-year-old asking government for equal treatment for rare diseases
An Alberta teenager who suffers from a rare muscular disorder says he will die without an expensive drug treatment.
Trevor Pare, 17, suffers from Pompe disease, a buildup of glycogen in the body that weakens muscles and can be fatal. The teenager uses a wheelchair but has been taking a drug called Myozyme since 2004 that helps control his condition.
"In about Grade 7, when I was about 13 or 14, I really noticed me getting weaker until I got the drug," he said from his home in Innisfail, about 100 kilometres north of Calgary.
The $500,000 annual cost of the drug has been waived so far because Pare was part of a clinical trial. But the trial ends in May and the therapy is not covered by the Alberta or federal governments.
Pare said his doctors have told him he will probably die in three to six months without the drug.
"Every day, it's just like a clock ticking down," the teenager said. "It's scary to me."
Pompe disease affects one in 40,000 people; Pare is one of four Albertans who suffers from it.
Pare and his mother, Linda, will be at the Alberta legislature Friday to bring attention to the inaugural International Rare Disease Day, and ask the government to give Canadians like Trevor fair and equal access to treatment.
Linda Pare said she's been lobbying for more than a decade to have drugs for rare disorders like her son's paid for.
She said she's been in touch with the prime minister's office and talked personally to Premier Ed Stelmach, but both levels of government have told her paying for Myozyme is not their responsibility.
"I would love for these people to sit down with me and talk to me, explain to me and Trevor exactly why aren't they helping us, why are they willing to let my son die — because I'm not," said Linda Pare.
Group lobbies for treatment fund
The Canadian Organization for Rare Disorders says about 30,000 Canadians suffer from rare disorders that require expensive drugs and treatments not covered by federal or provincial health plans.
Ed Koning, the group's vice-president, travelled from his home in Edmonton to Ottawa Friday to persuade the government to set up a $150-million fund to pay for the treatment of rare diseases. Koning himself suffers from Fabry disease, a disorder that interferes with the body's ability to break down fatty substances.
"It's to make our politicians aware of the need for a 'chance for life' fund in Canada to enable people like myself living with a rare life-threatening disease to get access to drugs and therapies that are available in many parts of the world, but not necessarily in Canada," said Koning.