Alberta to cover costly drugs for rare disorders

Alberta's revamped drug program will cover expensive treatments for people with rare diseases.

The province announced Monday that it will pay drug costs for Albertans who have genetic disorders that affect fewer than one in 50,000 Canadians, or fewer than 50 Albertans.

An individual or family must have lived in Alberta for five years to qualify for the funding, which will be decided by a panel of specialists in genetic disorders.

Trevor Pare, 18, called the decision "awesome" from his home in Innisfail in central Alberta.

The teen has Pompe disease, a buildup of glycogen in the body that weakens the heart and muscles and can be fatal. The condition affects one in 40,000 people; Pare is one of four Albertans who suffers from it.

Pare, who uses a wheelchair, was part of a medical trial for a drug called Myozyme that helped control his condition, but also cost $750,000 a year.

After an intense lobbying campaign by Pare and his mother, the province agreed to pay for the medication when the clinical trial ended in May, and promised to keep paying for it until a policy to cover all rare diseases could be written.

'For ethical and compassionate reasons, government is funding this program.' —Alberta fact sheet

Monday's announcement will help Albertans like Pare, but his family says they will continue to help fight for people with rare diseases in other parts of Canada because there is no federal drug coverage program.

"I think it's really sad that it's just for Alberta," Trevor's mother, Linda Pare, told CBC News. "I think it has to go clean across Canada. We know people across Canada that have Pompe disease and Gaucher's disease and I think they deserve every bit of chance like we have."

The drugs needed by Albertans with rare, genetic disorders can cost between $250,000 to $1 million a year.

"For ethical and compassionate reasons, government is funding this program," said a provincial fact sheet released Monday.

Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders, said the criteria for Alberta's new rare diseases drug program is too limiting because it won't include drugs for some cancers and other illnesses.

"There are rare cancer diseases like liver and kidney cancer. Even though there's a separate program for hypertension, there are rare blood disorders not covered under this program," Wong-Rieger said.

The program starts April 1, 2009.