Group calls for national policy to cover drugs for rare diseases

From CBC News:
A group that represents Canadians with rare disorders is calling for a national policy to help pay for their astronomical medical costs.

The call comes after the Alberta government decided to pay for a drug for a 17-year-old boy stricken with Pompe disease, a rare and potentially fatal disease caused by an enzyme deficiency that disables muscles.

Trevor Pare of Innisfail has been a participant in a clinical trial that paid for the drug Myozyme. The trial is over at the end of May and the Alberta government has decided to take over the annual cost, which is more than $500,000.

"It's just like unbelievable, unbelievable," Linda Pare, Trevor's mother, told CBC News. She said without the drug, her son would die in six months.

The Canadian Organization for Rare Disorders is pleased Trevor will continue to get his special drug.

But Durhane Wong-Rieger, president of the organization, said it is time for a national policy on funding of drugs used to treat rare diseases. ...more