Overturn Nice denial of Cystic Fibrosis Drug Orkambi

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My youngest daughter Gemma has Cystic Fibrosis a genetically inherited incurable disease. This disease blights thousands of young lives and killspatients prematurely. She recently lost another dear friend from this awful disease and many more will follow. Cystic Fibrosis affects patients by clogging lungs and digestive systems with thick mucus to cause irreversible damage to lungs and digestive systems. That is only part of the long term problems that this disease manages to inflict on CF sufferers. The National Institute for Health and Care Excellence has ruled that a new drug Orkambi will not be funded in England citing ''cost effectiveness'' This despite the US manufacturer Vertex obtaining excellent results in the US for some eligible CF patients. The Cystic Fibrosis trust in the UK stated data shows that Orkambi slows the rate of decline in lung function for CF Patients by nearly half and could add years to a CF Patients life. ''What price a life'' This drug may not benefit my daughter who will be 34 years old on December 8th 2016. She has 4 year old twins Lillie Anne & Joshua & runs her own hairdressing salon. Gemma is due to Marry her partner Phil in January 2017 and we are hopeful of a healthier life for a wonderful daughter,wife to be and Mother. Maybe it would benefit Gemma and countless other sufferers, we will never know unless NICE and Vertex can agree a deal on cost and availability.



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