Life Saving Medicine Needed for People with Cystic Fibrosis

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Three years ago, I was fortunate to have a little boy named Andre in my kindergarten class. He was quiet, yet full of energy.  I soon came to realize he had Cystic Fibrosis.

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure.

CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.

There are some new genetically modifying drugs available that treat the actual underlying cause of the Cystic Fibrosis.  These drugs (Kalydeco, Orkambi & Symdeko) have been approved safe & effective by Health Canada, yet our government is not covering them, nor are they sitting down with the drug company (Vertex Pharmaceuticals) to negotiate a better price for them. 14 other countries have done this (including the USA, Australia, & Ireland), and are providing access to their CF patients with amazing results. In Canada it currently costs $250 000/year for these drugs.   

Andre was lucky enough to start the drug Symdeko 1 year ago, as he was randomly selected to be part of a drug trial at Sick Kids Hospital.  His younger brother, Joshua, who also has Cystic Fibrosis, currently has no access to these drugs. Andre’s mother, Sasha, has seen amazing benefits for Andre since taking this drug.  They are personally fighting for these drugs so Andre and Joshua’s health can be stabilized, and their futures can be full of health instead of sickness. Unfortunately there are CF patients who’s health has already declined significantly and they will not live another year without this medication.  We are fighting for those as well.  

Directly from Andre’s mom, Sasha:

What we are asking members of the community to do is to send an email to our Minister of Health, Christine Elliott. We have been trying for months to get a meeting with her and have had no luck so far. If you are interested in helping us, please consider signing this petition. 

Thank you!