Gemma Daysh, a mum from Portsmouth, Hampshire was featured on BBC South Today on 3rd January, 2017 to highlight the fight faced by the cystic fibrosis community to gain access to a new ground-breaking drug Orkambi.
Gemma and partner Mathew Weir have two young children Charlie and Ivy. Three-year-old Ivy has the genetic disease cystic fibrosis (CF) a life-shortening condition that causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
In November 2015 a revolutionary drug, Orkambi was licensed for use in the UK, however a year later the drug is still not available on the NHS due to cost grounds.
(The estimated cost is £104.000 per patient, per year). Orkambi can help around 40% of CF patients in the UK (those with two copies of f508del mutation of the disease) and Ivy is one of the patients that could benefit.
View the South Today interview here.
Anyone who would like to help with the Orkambi campaign can write to their MP or even just share this video to help educate the public about cystic fibrosis and the need for access to drugs like Orkambi.
There is also a social media campaign, which has been supported by a number of celebrities. Simply take a photo/selfie holding a #YesOrkambi sign and post on Facebook/Twitter/Instagram/Tumblr using the hashtag #YesOrkambi.
