All Canadians with Spinal Muscular Atrophy (SMA) have a right to life saving treatment!
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There is no greater pain than watching someone you love lose their quality of life, more and more every day and not be able to do anything about it.
Spinal Muscular Atrophy (SMA) is a progressive and rare genetic disease that robs its victims of their physical strength while their mental capacity remains completely intact. They lose their ability to walk, crawl, sit, and eventually to even swallow and breathe.
Patients and families have only ever heard the words "Unfortunately it is SMA. There is no treatment, no cure, love them for as long as you have them." Cure SMA Canada was developed to support families and fund Canadian SMA research. The SMA community would not give up hope, even through the devastating losses of life. Three years ago, a treatment was developed called Spinraza from Biogen. SMA families around the world were beyond thrilled and even more so with the clinical trial and real world results that proved it changed life dramatically for the patients who received it. So life changing are the experiences of patients who received this treatment, that this drug changed the landscape of the disease. Patients can now look forward to their future!
Now the problem:
45 countries have approved Spinraza. Quebec, Ontario, Saskatchewan, New Brunswick, Yukon and Alberta have approved it. The rest of the provinces have patients who have been waiting years and progressing while patients in other provinces are improving in health.
Many have said that knowing there is a treatment, but being unable to access it is even more devastating than the actual diagnoses itself. Its hard to put into words the anxiety and deep sadness we feel to see some patients elated to be looking ahead to their future while others are fearful of it. We have lost enough.
Negotiations are complete between the pCPA and Biogen, 6 provinces were able to come to a feasible solution for their jurisdiction, and their patients. Surely the rest can make it work as well.
WHEREAS clinical evidence has demonstrated that Spinraza significantly reduces the risk of dying and improves motor and respiratory functions;
WHEREAS patients with a broad spectrum of Spinal Muscular Atrophy (SMA) receive Spinraza treatment in 45 other countries;
WHEREAS results from clinical trials demonstrated such clear benefit that it was deemed unethical to keep patients on placebo; hence trials were discontinued and patients switched to actual therapy;
WHEREAS Spinraza’s health benefits would considerably alleviate provincial medical and social costs;
WHEREAS funding has been granted for the treatment of patients in 6 provinces Denial of treatment by the rest would essentially discriminate against SMA patients in these provinces;
WHEREAS the very small number of SMA patients would result in a very low overall budget impact, and. the drug’s net impact should take into account the potential to delay or avoid more invasive and costly procedures;
WHEREAS Spinraza treatment for SMA of any type should be started as early as possible to prevent disease progression and loss of motor and respiratory functions, ultimately saving life as well as improving quality of life.
WHEREAS Canadian patients should not be restricted to access life saving healthcare dependent on their postal code.
TICK TOCK!!! The clock continues to move relentlessly forward for a patient affected by SMA. Every day without treatment is taking something from us we can’t get back. Some have paid the ultimate price of losing a loved one. All SMA patients have lost abilities and worry about losing more. Cure SMA Canada, and the SMA community are counting on you to ensure the BC, Manitoba, Nova Scotia, PEI, and Newfoundland governments make the right decision. Our lives depend on it!
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