The B.C. government has announced it will begin covering the cost of an expensive drug used to treat spinal muscular atrophy (SMA), a severe and rare neuromuscular disease.
The annual cost of the medication — called risdiplam or Evrysdi — is between $93,456 and $354,000 depending on the age and weight of the patient.
The funding decision was finalized in negotiations with the manufacturer and pan-Canadian Pharmaceutical Alliance, an alliance of federal, provincial and territorial governments that negotiates on a range of public drug plan initiatives.
“The Ministry of Health will provide funding for risdiplam through the BC Expensive Drugs for Rare Diseases (EDRD) process for eligible SMA patients,” the department said in a Tuesday news release.
“EDRDs are considered non-benefits, but some drugs and patients may be eligible for coverage on a case-by-case, last-resort basis.”
The province said patients will need to discuss their eligibility for oral drug and funding for it with their health-care provider.
Spinal muscular atrophy is a group of hereditary diseases that affect spinal cord nerve cells and weaken the muscles used for breathing, eating, speaking, crawling and walking.
According to the National Institute of Neurological Disorders and Stroke, its patients lack a critical protein that maintains the health and function of motor neurons. Symptoms usually appear in the first year of life and the condition can be fatal.
As it stands, there are an estimated 23 pediatric and 10 adult patients eligible for risdiplam in B.C., according to the Ministry of Health.
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