Alberta to cover drug treatment for teen with rare muscle disorder
Last Updated: Monday, May 12, 2008 | 4:45 PM ET
CBC News
Trevor Pare, 17, said the province's decision to fund expensive treatment for a rare disease came as a surprise. (CBC)An Alberta woman says the province gave her the perfect Mother's Day gift: drug treatment for her son's rare muscle disorder.
Linda Pare, of Innisfail, learned over the weekend that the government would cover the more than $750,000-a-year cost of her son Trevor's treatment for Pompe disease, which weakens the muscles. There are only 13 known cases in Canada.
"Happy is not even the word," she said. "My whole body was just vibrating. You know what it feels like is if you have won the lottery, only even better because it's Trevor's life. It's just like millions and millions of pounds have been lifted."
Her 17-year-old son, who is in a wheelchair, was born with the disease. Pare said his condition has improved with the drug Myozyme, which he has been taking free as part of a clinical trial.
However, the trial is slated to finish at the end of this month, and Pare worried her son would die if someone did not step forward to help her pay for the treatment.
Health Minister Ron Liepert said he shared the news with the woman himself after the caucus made "a moral decision.
"In this particular case, the clinical trial was expiring, the caucus made the decision and it's a moral decision, and we will be funding the drug through the Blue Cross plan."
He said the government is working on a plan for funding drug treatments of rare diseases, to be rolled out within the next few months.
Three other Albertans also suffer from Pompe disease. The Health Department said their drug treatments are already covered.
