B.C. to fund drug that fights spinal disease in infants

VICTORIA (NEWS 113) — Starting next month, babies in B.C. with a rare and sometimes deadly disease will have access to what’s described as life-changing medication.

B.C.’s Ministry of Health announces the province will fund access to Spinraza, the first and only available treatment shown to slow or even reverse the effects of spinal muscular atrophy, a disease that affects motor neurons in the spinal cord, leading to paralysis and death in the most severe cases.

A press release by the ministry says the recommendation was made by the independent Common Drug Review (CDR), and the drug will be available for infants with onsets of SMA symptoms at or before seven months of age and fall within the type 1 group of patients.

“Spinraza received a positive CDR recommendation based on the submitted clinical evidence in November 2017. The recommendation was conditional upon a substantial price reduction and limited to the type 1 SMA patient group. British Columbia, as part of the pan-Canadian Pharmaceutical Alliance (pCPA), subsequently entered into pricing negotiations with Spinraza’s manufacturer, Biogen,” the statement reads.

The provincial government has added Spinraza to the list of drugs funded by Pharmacare. For the first year, it costs approximately $708,000 per patient and roughly $354,000 each following year.

Worldwide, this degenerative neuromuscular disease is also the leading genetic cause of infant death and there are three types of the disease.

Type 1: patients show signs and symptoms at or before seven months of age and cannot sit unsupported represent approximately 60 per cent of diagnosed cases. Typical life expectancy is of two years of age.

Type 2: patients show signs and symptoms between seven months and 18 months of age. Although most can sit unsupported, they usually cannot walk independently. Life expectancy is over 25 years of age and is greatly improved by aggressive supportive care.

Type 3: patients may show signs and symptoms between 18 months and 18 years. Patients can walk independently, however, continued declining mobility may result in the use of a wheelchair. Type 3 patients typically have a normal life expectancy and represent roughly 10 per cent to 20 per cent of cases.

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