Health minister under  pressure to approve  expensive drug for sick boy


Health minister under pressure to approve expensive drug for sick boy

CHRIS MORRIS Legislature Bureau

December 9, 2015

Andrew McFadyen, executive director of The Isaac Foundation, travelled from Ontario to Fredericton on Wednesday to lobby the Liberal government on behalf of Morgan Doucet, a 10-year-old boy from the Miramichi region, who has been denied treatment for a life threatening condition.

Photo: Chris Morris/Legislature Bureau

FREDERICTON • The New Brunswick Health Department is under pressure to reconsider the case of a little boy in northern New Brunswick who has been denied access to an expensive medical treatment that could improve and possibly lengthen his life.

Jake Stewart, opposition Tory MLA for Southwest Miramichi-Bay du Vin, raised the issue in the legislature on Wednesday, appealing to Health Minister Victor Boudreau to reconsider his department’s earlier decision to deny the child, Morgan Doucet of Baie-Sainte-Anne, a promising new treatment for the rare disease, Morquio Syndrome.

The treatment, which would cost about $300,000 a year for Morgan, has been approved by Health Canada but it was not given the go-ahead in New Brunswick following a review. The New Brunswick Health Department formally rejected the Doucet family’s application for help in October and has not provided an avenue for appeal.

Stewart said the family now has decided to allow their situation to become public. He said it is a heartbreaking case, made worse by what he described as a seemingly callous and bureaucratic response to the plight of a child in need.

“It is really simple what they (health officials) have to do: he is a 10-year-old boy; he is the only citizen of New Brunswick who has this disease; it is life-threatening – help him,” Stewart said in an interview.

“That is all we are asking. It’s not about politics – just help this little boy.”

Boudreau told the legislature that he cannot comment on the case specifically because of privacy issues. But he insisted he is not heartless.

“These are very difficult situations,” Boudreau said. “These are not easy files to deal with. I can assure you of that. Everybody in this legislature has a heart and understands that these decisions are difficult to make.

“Without talking about the case in particular, I can tell you that, across the country and in New Brunswick, some cases get approved and some cases do not. We follow a process.”

After question period on Wednesday, Boudreau met privately with Andrew McFadyen of the Ontario-based Isaac Foundation who travelled to Fredericton to press the minister on Morgan’s case.

“He made no commitments or promises,” McFadyen said of Boudreau. “He believes in the process currently in place but he will take a step back and look at this case and be in touch with me.

“I’ve been trying to talk with him about this decision since it was rendered in October and I have been stonewalled. It is encouraging but I had hoped for a bit more, at least a commitment to have a second review of this.”

The Health Department would neither confirm nor deny that the minister has agreed to take another look at the file, citing privacy concerns.

The process followed by the Health Department involved sending the file to an independent reviewer in Ontario who felt the best that could be expected from the costly treatment is “some slowing of the progression” of the disease.

McFadyen’s own son has a different form of Morquio Syndrome. It is believed there are only 33 cases in Canada, and Morgan Doucet is the only known case in New Brunswick.

McFadyen said sufferers of Morquio Syndrome lack an enzyme in their blood that breaks down cellular waste in the body. The waste builds up in the bones, tissues, organs and muscles and leads to such symptoms as heart and airway disease, corneal clouding, stiffening of the joints, shortened stature, and premature death.

He said the treatment being denied to Morgan dramatically slows or halts the disease, improves pulmonary function, walking ability and gives patients the chance at a normal life.

The treatment currently is funded in Saskatchewan, Ontario and Quebec.

Source: https://www.telegraphjournal.com/telegraph-journal/story/45005525/health-minister-under-pressure