Newspaper article The Canadian Press

Province Will Cover Costly Drug to Treat Young Boy with Rare Disease

Newspaper article The Canadian Press

Province Will Cover Costly Drug to Treat Young Boy with Rare Disease

Article excerpt

Province will fund costly treatment for boy

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FREDERICTON - A 10-year-old New Brunswick boy suffering from a rare and often fatal disease will receive an expensive treatment for his illness for one year, the province's health minister said Wednesday, reversing a decision the government made earlier this year.

Victor Boudreau issued a brief statement saying the province will pay for up to 12 month's worth of Vimizim to assess its effectiveness in treating Morgan Doucet, who has Morquio syndrome.

The boy's mother, Carolle Mazerolle, was elated with the news.

"It really surprised me," she said in an interview from her home in Baie-Sainte-Anne, N.B. "I don't know what changed their decision and I don't care. I'm just glad we got it ... It's a great Christmas gift."

She said Morgan is in declining health because the disease causes an enzyme deficiency that leads to many complications.

As a result, the boy always feels sick, has headaches and often vomits. He also has a hard time breathing, uses a walker to get around and has had several surgeries.

The drug costs about $200,000 annually.

Last week, Boudreau said he instructed health officials to find an independent specialist to offer a second opinion about the drug, made by BioMarin Pharmaceutical (Canada) Inc.

Boudreau could not be reached for comment Wednesday. However, he issued a statement saying New Brunswick will work with other provinces to devise a national approach to reviewing expensive drugs for rare diseases.

The issue is expected to be part of high-level discussions next month when provincial health ministers meet with their new federal counterpart, Jane Philpott.

Durhane Wong-Rieger, CEO of the Canadian Organization for Rare Disorders, said every province faces the same thorny questions when residents ask for help paying for pricey medications for rare ailments.

"Most rare-disease drugs don't go on to anybody's formulary," she said, referring to the list of drugs each province is willing to routinely pay for. "Quite frankly, they should not go on a formulary because they are highly specialized drugs. …

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