Help Save Liam and others with Cystic Fibrosis. Say yes to Orkambi
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I'm starting this petition for my 16 year old son with CF and others with the DDF508 gene that do and could benefit from taking Orkambi. Liam took part in the trial for Orkambi with amazing results. Prior to Orkambi he was admitted to hosp 3-4 times a year anywhere from 2-4 weeks each time. He had a VAD line surgically inserted in his chest to better take advantage of being hooked up to IV and have blood work done. He also had a hard time gaining weight and his lung function was very low. Since being on Orkambi his last admission was Nov 23 2013. That's over 3 yrs. He has had his VAD line removed as he doesn't require it and he has gained both weight and lung function. His quality of life is better and he feels normal. He couldn't do runs at school without tiring out and being teased now he can run. I know that sounds simple and it should be but isn't when you has CF. I know of others also on this and it is amazing their progress and some that should be on it and cannot get access. It's sad and wrong. The provincial government for all provinces need to have this accessible thru the various medical programs. Vertex needs to look at lowering the cost so people can use it. Now the provinces have closed the book and will not have it covered which means people will not get access. For my son this means lung function going down and many hospital visits in his future. For everyone this could help it means their lifespan effected. My son did an interview with CBC. Please google CBC Vancouver orkambi and get more info. Please sign this petition and share with everyone. It's people's lives. Please share this petition with everyone you know.
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Debbie Simpson needs your help with “Terry Lake BC Minister of Health: Help Save Liam and others with Cystic Fibrosis. Say yes to Orkambi”. Join Debbie and 136 supporters today.