Dieppe mom wants $350K drug covered for son

Stephanie Melanson says when her four-year-old son would reach for a toy, he would just "flop over" and not be able to get back up.

But since he has been taking an experimental drug, she has noticed a big improvement, just playing with other children, writing, drawing and eating — "things that are taken for granted," the Dieppe mom said in an interview with Radio-Canada.

Dominic Melanson suffers from spinal muscular atrophy, a rare condition that gradually deteriorates his motor skills.

He is taking the drug Spinraza as part of a trial experiment. The trial is scheduled to last five years, but his mother said it could end whenever the drug company is satisfied it has all the data it needs.

If Melanson has to start paying for it, she said it would cost about $350,000 a year for the rest of his life.

Last year, Health Canada approved Spinraza to treat spinal muscular atrophy. But the federal and provincial governments only cover the cost of the drug based on recommendations from the Canadian Agency for Drugs and Technologies in Health.

Last year, the CADTH recommended only a small subset of patients who have spinal muscular atrophy Type 1 — the most severe form of the disease — and who are diagnosed before they turn seven months, should be covered.

Melanson is pleading for for the government to cover it for everyone with spinal muscular atrophy, including her son.

"It's a drug that halts the progression which is the ultimate goal for us," she told CBC New Brunswick host Harry Forrestall.

"About two months after his first injections we noticed he had more stability, he was stronger, had more energy."