People with a rare and progressive disease causing paralysis and death are fighting for access to a newly approved drug.

Nusinersen, sold under the name Spinraza, is the only approved treatment for spinal muscular atrophy (SMA). The drug can stop and even reverse symptoms.

Health Canada has approved the drug, but it is only covered for a small subset of patients who have Type 1 SMA, the most severe form of the disease, and who are diagnosed before they turn seven months.

The treatment is financially inaccessible for most: it costs $750,000 for the first year and $350,000 for each year thereafter. Most insurance plans won't cover it and provinces say they can't afford to either.

The SMA community is now rallying the government to broaden the coverage - taking their fight to Ottawa and here to Montreal on Wednesday.

Parents of patients, those living with SMA, and doctors said something needs to be done to broaden the coverage for all who need this life-changing treatment.

“Whether it's end-of-life, newly diagnosed, crisis during life, parents that are having a hard time holding on to hope… because year after year, we're waiting for a treatment that's finally here. My own daughter is 21 years old. We've done many fundraisers and we have attended many funerals,” said Susi Vander Wyk of Cure SMA Canada.

Quebec estimates that it would cost the province $9.3 million a year to cover the treatment, and said it can't do anything until the cost comes down.

Cure SMA Canada is encouraging provinces to work together with Health Canada to negotiate a better price from the manufacturer.