N.B. woman with rare disease says government won’t help with treatment

FREDERICTON – A New Brunswick woman says she is being denied treatment for a rare disease because the provincial government refuses to cover it.

Annette Sebey of Perth-Andover suffers from Pompe disease, an inherited disorder that creates an accumulation of a complex sugar called glycogen, which impairs the function of organs and muscles.

The 46-year-old says the enzyme replacement therapy Myozyme was approved by Health Canada in 2006 and without it she could end up in a wheelchair and on a ventilator.

She says the government has refused to cover the drug because it has yet to gain approval of the common drug review, which approves new drugs and therapies for coverage in Canada.

Sebey says Myozyme is a proven therapy and New Brunswick stands alone in refusing to cover it.

Health Minister Hugh Flemming says Myozyme was reviewed by the Canadian Expert Drug Advisory Committee and recommended for provincial drug coverage for infantile-onset Pompe disease, which the province has done, but there was insufficient evidence to evaluate the drug’s effectiveness in late-onset Pompe disease.