Teen fears he may die without test drug
The Canadian Press
March 31, 2008
INNISFAIL, ALTA. -- An Alberta teenager fears he could die within six months if he cannot get an experimental drug for an extremely rare disease.
Seventeen-year-old Trevor Pare suffers from Pompe Disease and has been taking the drug Myozyme for the past four years as part of a clinical trial.
But the trial runs out at the end of May, leaving his family on the hook for the nearly $500,000 annual cost.
Pompe is a hereditary disease caused by a mutation in the gene that produces the enzyme alpha-glucosidase, which the body needs to break down glycogen.
Print Edition - Section Front
Enlarge Image
More National Stories
Why does 'a beautiful airplane' break up in the sky?
Tories plan to bolster Quebec in Constitution
Accused pathologist a hapless scapegoat, judge told
'When you lose your son to Canada, the flag becomes incredibly important to you'
Rioting prisoners were armed with gym's aluminum bats
Consumer-protection law defective, study finds
Go to the National section
Mr. Pare is one of only 13 people diagnosed with Pompe in Canada and one of about 900 worldwide.
Alberta Health and Wellness spokesman Howard May says the province is currently reviewing whether to continue funding use of the drug.
"We're still waiting for all the information we need [from the drug manufacturer] to complete the review," Mr. May said.
Diagnosed with Pompe as a baby, doctors told Mr. Pare's parents he likely wouldn't live past his first birthday.
As a result of glycogen buildup in the body, damage occurs to the heart and other muscles, and sufferers eventually die of respiratory or heart failure.
But after surviving to the age of 13, Mr. Pare began the clinical trial on Myozyme.
"Before he was on it he was grey in colour and he had no head control," said Mr. Pare's mother, Linda Pare.
"If someone bumped his wheelchair his head would either fall to the back or the front. Now he can move his head forward and back, he can feed himself, and he attends school full-time."
Administered intravenously, the drug is given through a tube in the teen's chest over a 10-hour period, something he does every two weeks.
Mr. Pare's family says the teen's doctor has said that without the drug, Mr. Pare will likely be on a respirator in three months, and dead in six months.
"I'm scared," said Mr. Pare from his family's home in Innisfail on Saturday.
"May is coming and no one is doing anything to help us."
