17-year-old asking government for equal treatment for rare diseases
Last Updated: Friday, February 29, 2008 | 6:48 AM MT
CBC News
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 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.
Trevor Pare suffers from Pompe
disease, a rare condition that
weakens his muscles and can be
fatal.
(CBC)
Linda Pare has been lobbying for more
than a decade to have drugs for rare
disorders paid for.
(CBC)
Alberta teen pleads for $500,000 drug therapy Page 1 of 1
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Trevor Pare suffers from Pompe
disease, a rare condition that
weakens his muscles and can be
fatal.
(CBC)

Linda Pare has been lobbying for more
than a decade to have drugs for rare
disorders paid for.
(CBC)