Teen fears he may die without test drug

From the Globe and Mail:
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. ...more