SPINRAZA FOR ALL CHILDREN – A HARD-FOUGHT VICTORY FOR PATIENTS
CALGARY, AB – Member of Parliament for Calgary Shepard, Tom Kmiec, and Alberta’s Member of the Legislative Assembly for Calgary-South East, Matt Jones, issued the following joint statement in response to today’s decision by the government of Alberta to expand coverage for ‘miracle drug’ Spinraza, used to treat spinal muscular atrophy (SMA).
“The Alberta government had made the right and compassionate decision. This will ensure SMA patients in Alberta get the medication they need. Government should be about people, not process.” Mr. Kmiec stated.
Today’s announcement by the Alberta government that Spinraza will be made available to all patients under 18 provides much-anticipated relief to Alberta families who have been suffering with this life-threatening rare disorder.
Despite Health Canada approving Spinraza in June 2017, the Canadian Agency for Drugs and Technologies in Health (CADTH) issued a restrictive reimbursement recommendation for the drug that was totally ignorant of current standards in clinical trials for small patient populations for severe and progressively disabling conditions. This unfair decision by CADTH prevented provinces from negotiating access to Spinraza for patients and blocked hundreds of Canadians living with SMA from accessing this life-saving medication.
After being contacted by two families in his Southeast Calgary riding who are living with SMA and unable to access Spinraza, Mr. Kmiec became a vocal advocate for ignoring CADTH’s unfair recommendation and ensuring that the medication was made available to everyone who needs it. After his recent election as the MLA for Calgary-South East, MLA Matt Jones joined forces with Mr. Kmiec in pressuring the Alberta government to approve this life-saving medicine.
MP Kmiec and MLA Jones remain committed to improving access to life-saving medications for Canadians and improving the drug approval process for rare medicines and treatments.
For more information:
Office of Tom Kmiec, MP
Office of Matt Jones, MLA