Approve life-saving SPINRAZA treatment for SMA patients in Ontario

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My name is Blythe Wieclawek and I am a 14-year-old girl from Oro Medonte, Ontario. My older brother Jared, my best friend, suffers from type II Spinal Muscular Atrophy (SMA), a rare neuromuscular disorder characterized by loss of lower motor neurons and progressive muscle wasting, often leading to an early death.

Over the past few years, there have been many breakthroughs in finding a cure for SMA. One of those breakthroughs is the invention of Spinraza, a drug proven to dramatically help SMA in infant patients and help slow the effects in older patients. This new drug is life changing for those living with SMA.

Spinraza has been approved and fully funded in over 20 countries and in Quebec and Saskatchewan — but not Ontario. If my family were to pay for my brother’s lifesaving treatment out of pocket, we would go bankrupt.

Why? Spinraza costs over $500,000 a YEAR. It is virtually IMPOSSIBLE to pay for treatment out of pocket. I also have a little sister. How is my family supposed to pay for my brother's treatment while keeping my family financially stable?

If Ontario does not approve Spinraza for all patients my family may be forced to move to another province, maybe across the country, in order to receive this treatment. We will be uprooted and forced to leave in order to give my brother a chance.

So I am calling for change, NOW. Ontario MUST approve Spinraza for children suffering from SMA. Families just like mine shouldn’t have to make impossible decisions to help their children.

Please help me help my family, and all the other families in Ontario living with SMA. Thank you