Cure SMA Canada urges timely, committed negotiations to provide coverage of first-ever and life-saving treatment for debilitating childhood disease.
Cure SMA Canada, on behalf of Canadians diagnosed with Spinal Muscular Atrophy (SMA), our patient community and its supporters, is urging the provinces to come together and find a way to make Spinraza, the first-ever and ONLY treatment for SMA, available to all Canadian patients who could benefit.
Children who are currently on this drug have seen amazing results. Public access is needed so that all patients affected by SMA that can benefit, receive treatment.
It has now been a month since the SMA community received the devastating recommendation in Quebec to not fund the treatment and the recommendation by the CADTH Common Drug Review to only fund a small subset of SMA type 1 patients. In the time since, there has been no movement towards negotiations and any hope for finding a feasible path to access Spinraza has come to a standstill. The pCPA does not even have it on their list of drug products to be considered for recommendation for negotiation. This is despite 15 other countries having secured broad access for Spinraza for SMA patients.
“We are very frustrated with the Quebec and CDEC decisions in December 2017 and the subsequent stand-still on negotiations around public access for the ONLY treatment available for SMA. We have approached Biogen and have asked them contact provincial governments and negotiate a solution so that our patients can access this treatment. We agree the price of this treatment is too high but we have confirmation from Biogen that they are willing to negotiate. We are very frustrated, our SMA patients have no other treatment options. We need Biogen and the provincial government to come together for a solution that benefits us all, but mostly we need everybody to remember that there is one group of people that are waiting and waiting for access to a treatment that can affect longevity and quality of life. TICK TOCK!!!! This is a disease where time matters and time is something we just don’t have.” said Susi Vander Wyk, Cure SMA Canada Executive Director.
“Their lives have value and their right to have treatment should be a priority. We have lived with hope since the date of each of our diagnoses. The hope that one day there would be a treatment for SMA. We now have a treatment but are unable to access it. This is unacceptable and unbelievable. We will continue to share our stories with government, media and Canadians to show the positive potential of providing access and coverage for this proven, life-saving treatment – and give children and adults living with SMA a fighting chance,” Vander Wyk added.
Patients with SMA cannot afford to wait; one day can be the difference between a child losing their ability to walk, to sit up, even to breathe on their own – right now, this is the only hope for impacted families.
About Spinal Muscular Atrophy (SMA) and Cure SMA Canada
SMA is a rare disease that is the leading genetic cause of death in infants and toddlers, affecting approximately 1 in 6,000 live births. SMA causes progressive, debilitating muscle weakness in those affected. Its victims can become paralyzed, have difficulty breathing and swallowing. If diagnosed with type 1, the most severe form of SMA, the children usually die before the age of 2. The disease renders its victims weaker as time progresses, however cognitively, they are completely normal. For more information, visit CureSMA.ca.
We have a number of families across the country who would like to share their stories. Please contact Susi Vander Wyk at curesma@telus.net.
