Press release: 23rd December 2016
Dozens of celebrities have thrown their weight behind a campaign for the cystic fibrosis community in both Ireland and UK to gain access to a new, ground-breaking drug with the potential to save lives.
The drug, Orkambi, is one of the first ‘precision medicines’ to target the root cause of CF rather than just the symptoms.
It was licensed in the UK in November 2015. However, NICE (National Instittute for Health and Care Excellence) opted not to recommend the drug to the NHS on cost grounds.
A similar scenario in Ireland recently led to a demonstration outside Leinster House (Irish Parliament) with angry protesters pleading ‘Don’t put a price on our lives’.
The strength of emotion has galvanised and united CF communities around the world and provided a launch pad for the #YesOrkambi campaign.
Celebrities including Ross Kemp, Giovanna Fletcher, Brendan O’ Carroll (Mrs Brown’s Boys), actress Jo Joyner (Tanya in Eastenders), Christine and Neil Hamilton and Nathalie Emmauel (Missandei in Game of Thrones) have already posted their support on Twitter, Facebook and Instagram.
Giovanna Fletcher (actress, author and wife of McFly’s Tom Fletcher) posted this message “I’m only just learning about the drug Orkambi and what it could mean for those with #cysticfibrosis. Let’s get the drug here!”
Young Dracula star Gerran Howell tweeted “Show your support with a selfie & the hashtag #YesOrkambi to help people living with CF this drug (sic) on the NHS”.
A spokesperson for the CF community said “There are 10,800 people in the UK with cystic fibrosis. Ireland has the highest incidence of the disease in the world. The families of all of these people are affected too, both by the heavy burden of treatment (daily physiotherapy, nebulisers, frequent hospitalisations) and by the emotional stress.
“These people struggle with so many issues, from disability allowances to fitting in all of their treatments while trying to live as normal a life as possible.
“Their lung function can suddenly decline rapidly with no obvious explanation which is frightening. Adult patients with CF even have to pay for their own prescriptions – this is because in the 1960’s when the current legislation was written there was very little chance of a person with CF living to adulthood.
“Now a revolutionary drug has been developed that can help a large percentage of CF patients (those with two copies of f508del mutation of the disease), yet we are told it is too expensive to be approved. What message does this send to people living with cystic fibrosis and their families? We need the general public to show support and help us fight for the chance of a healthier future and a better quality of life.”
To show your support for the fight to gain access to Orkambi please take a selfie holding a sign with the words #YesOrkambi (or write it on your hand!) and post on all your social media sites using the hashtag #YesOrkambi
Follow updates on the campaign at https://www.facebook.com/yesorkambi/ and https://www.facebook.com/strawfiechallenge/ – Or on Twitter @YesOrkambi and @Strawfie. The public can also sign this petition here.