B.C. to fund drug for babies living with spinal muscular atrophy

B.C. has announced it will be funding a life-changing treatment for spinal muscular atrophy (SMA).

Babies who are seven months old, or younger, who are living with SMA will soon have access to a drug called Spinraza.

People with SMA lack a protein that leads to constant deterioration of their muscles. But there is a cure. Spinraza not only stops the deterioration but if caught early enough can reverse the effects of the disease.

The medication comes at an enormous cost as each dose of Spinraza costs $100,000. The first year of treatment can cost more than $700,000, and $350,000 every year after that.

The FDA in the U.S. approved the drug two years ago, and it was approved for use in Canada last year, but patients in B.C. have not been able to get access to it.

On Tuesday, the B.C. government announced it will now fund the drug (at a significant discount) but only for 60 per cent of patients. There are three types of SMA, and only Type 1 patients will see government funding for Spinraza.

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The remaining patients – Type 2 and 3 will receive the medication through the pharmaceutical company BioGen until there is more evidence to support giving it to all patients.

Parents of kids suffering from SMA are relieved the B.C. government has made strides to provide this miracle drug to all patients, but want things to move much faster through the government. Some people are suggesting all babies should be screened for SMA.

The disease is usually diagnosed in kids about two years old, but if Spinraza can be administered before there are symptoms, the patients may never see any symptoms at all.