FREDERICTON – About 40 Canadians suffer from Pompe Disease, a rare illness that causes muscular weakness and respiratory problems. And many of them were in Fredericton this weekend to support one of their own.
Annette Sebey is the only New Brunswicker with the disease. She’s also the only one who doesn’t get the treatment for the disease covered by the province.
For several years, others suffering from Pompe have been able to slow the progression of the disease because of the drug Myozyme.
But even with the launch of New Brunswick’s new catastrophic drug program, Myozyme is not on the provincial drug formulary and so isn’t covered by the province.
“I mean, it would be wonderful to get it. Even if it gives me 10 years, 10 more years of life to spend with my family would be awesome,” Sebey said.
About 25 of the 40 who suffer from the disease in Canada were in Fredericton to support Annette.
Brad Crittenden, president of the Canadian Association of Pompe says New Brunswick is ‘late to the game’.
“Why isn’t it happening here? There’s just no reason,” he said.
Ian MacPherson traveled from Ontario to support Annette. He’s been suffering from Pompe almost his entire life, and says the difference Myozyme made is indescribable.
“If it wasn’t for myozyme, I wouldn’t be here,” MacPherson said. “Before it, I was pretty much bed ridden, days would run into each other. I wouldn’t get out of bed. After I started medication, three or four months later I was outside, enjoying life, went back to school and to university, started living life again.”
Wes McLean, Annette’s MLA, says conversations are happening to help improve access to drugs that help those suffering from rare diseases.
“It’s another part of the puzzle that needs to be addressed,” he said.