FREDERICTON — New Brunswick's health minister says he will seek a second opinion about the province's decision not to pay for an expensive drug that could help a 10-year-old boy suffering from a rare genetic disorder.
Victor Boudreau confirmed Thursday that he made the decision after rejecting a request for a meeting with Morgan Doucet's parents and a specialist who is familiar with the treatments for those with Morquio syndrome.
Boudreau said it didn't make sense for him to meet the specialist so he cancelled the meeting.
"I am not an expert," he said in an interview. "I could not get into a scientific discussion or a debate with a specialist in the field."
However, the minister said he has instructed health officials to find an independent specialist to offer a second opinion about the effectiveness of the drug Vimizin, which can cost up to $200,000 annually.
"When you look across Canada or around the world, for this particular drug and this disease, there is a lot of varying opinions," Boudreau said. "There is no common agreement among specialists on the effectiveness of this drug."
The boy's mother, Carolle Mazerolle, said Morgan is in declining health because the disease causes an enzyme deficiency that leads to many complications.
"He's always sick," she said in a cellphone interview as she are her husband Glen Doucet were driving back to their home in Baie-Sainte-Anne — a three-hour drive from Fredericton.
"He has a hard time breathing ... Some days, he'll do a lot of vomiting. There's always headaches and he's tired. He sees the doctor a lot."
Morgan uses a walker to get around and he has had surgery several times, she said.
"This drug does work and I've seen it work on other children .... I'm glad he's going for a second opinion. I just hope that the opinion is from somebody who knows what they're talking about."
The province rejected the family's request to pay for the drug in October after consulting with a specialist in Ontario, which has a drug program for rare diseases.
Mazerolle said she was told the specialist concluded New Brunswick should not pay for the drug because there would be no way to conduct tests on Morgan to see if it was working.
Diagnosed at 15 months, Morgan has received various treatments over the years. Vimizin was approved by Health Canada in July 2014. Mazerolle said she applied for provincial funding in October 2014.
"It works for all of the other children, so why not mine?" she said, adding there is no appeal process once such a decision is made. "I'm going to keep fighting."
Earlier in the day, New Brunswick's child and youth advocate, Norman Bosse, agreed to investigate Morgan's case, Mazerolle said.
Boudreau noted the drug has been subjected to the federal Common Drug Review process, which concluded that the provinces should not pay for the medicine.
"However, on a case-by-case basis, some provinces have paid for it," he said.
The minister stressed the drug does not offer a cure and is not covered under any provincial drug formulary. As well, he said he couldn't speak in specific terms about the Morgan's case because of privacy restrictions.
