Province to fund teen's treatment

'It's like a dream come true,' says Innisfail mom

Alberta's decision to pick up the tab for an expensive therapy to treat an Innisfail teen's rare disease is giving hope to other patients with uncommon conditions who face huge bills for their drugs.

Trevor Pare, 17, who has a hereditary disease called Pompe, learned this week that the government will pay the $773,000 annual bill for a drug to treat his condition, which causes progressive muscle weakness.

Pare is one of only 13 Canadians who suffer from the condition and had been taking the drug Myozyme as part of a clinical trial since 2004. But the trial was to end May 27 and Pare's family said that without the government's help, this summer could have been the teen's last.

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Font:****"It's like a dream come true," said Linda Pare, Trevor's mother, in an interview Monday. "It's Trevor's life. What a gift."

Myozyme is one of several new therapies -- so-called "orphan drugs" -- that are emerging to treat rare diseases like Pompe, but the treatments can be prohibitively expensive and are seldom covered by health plans.

Other patients with rare conditions said Alberta's decision to pay for Pare's therapy is a step in the right direction.

"It's excellent news," said Raymond Amato, whose son Mackenzie Olsen suffers from a potentially fatal genetic disorder that is treated with a pricey orphan drug.

"Rather than cut these children off, we need to treat them and do the politics later."

Health Minister Ron Liepert said Monday that caucus decided to step in and offer funding through Alberta Blue Cross because Pare's clinical trial was expiring at the end of May.

He called the move "a moral decision," saying that ad hoc funding has been offered to patients in the past.

But he added the province wants to move away from making decisions on individual cases and give patients requiring orphan drugs more certainty on what's covered.

"We're currently developing a policy around drugs for rare diseases because they are increasing," Liepert said.

The policy will be part of a new pharmaceutical plan expected in the next few months as the province retools the medical system.

Groups like the Canadian Organization for Rare Disorders say the entire country needs an orphan drug policy to deal with this issue.

Kirsten Harkins, executive director of the Canadian MPS Society and a member of the rare disorders association, noted Ottawa recently took a major step toward developing a new policy.

"We need a broader (orphan drugs) policy," she said.

"Families dealing with rare diseases are already going through a lot of adversity. . . . They shouldn't have to fight for months and months to get treatment."

mlang@theherald.canwest.com

rdaliesio@theherald.canwest.com

© The Calgary Herald 2008