Vertex Pharmaceuticals are in negotiations with the NHS to supply Orkambi and other drugs that can transform and extend the lives of people with Cystic Fibrosis across the UK.
However, the NHS cannot afford their prices and patients like Luis are denied access. The only way Luis, and everyone with CF, can have the future they deserve is for Vertex to lower the price.
Please Vertex - make your drugs affordable to the NHS now!
Mettre À Jour #5il y a 6 ans
Handing-in of the petition to Vertex is now planned for 19th November. Please help us to get the maximum number of signatures by sharing - 100,000 would be amazing! This date is the 3 year anniversary since Orkambi was licensed in the EU. The drug is the only one that can stop the decline in patients with Luis' type of CF and it remains unavailable in the UK due to the high cost. People are suffering every day while the tablets sit on shelves. Please help us to make our voices heard. Thank you
Mettre À Jour #4il y a 6 ans
We're overwhelmed with the support - over 60,000! Thank you so much. Vertex Pharmaceuticals are currently back in negotiations with NHS England to supply their drugs and we need to keep the pressure up until a deal is done. I've held off delivering the petition until the right moment - if no agreement has been reached by the 3rd year anniversary of the drug Orkambi being licensed in the EU it will be handed over then. PLEASE CONTINUE TO SHARE and help us strive towards 100,000 signatures.
Mettre À Jour #3il y a 6 ans
Thanks again for the overwhelming support. Nearly at 35,000 signatures! We are anxiously awaiting a meeting between the NHS and Vertex which apparently is being arranged at the moment. Every day that goes by sees Luis and others with CF get more poorly. Tonight he has cleared so much nasty infection from his lungs it's a miracle he could breathe beforehand. Please continue to help by sharing the Petition. Once we know the meeting date we can plan to hand it over to Vertex.
Mettre À Jour #2il y a 6 ans
Thank you so much for signing - we've gained Worldwide support which is amazing - over 18,000 signatures & counting! People with Cystic Fibrosis have waited a long time to get a drug that tackles the root cause of their illness, instead most have to take 10's of different medicines & treatments daily to address symptoms (lung infections, digestive problems, CF-related Diabetes). It's heart breaking that Orkambi is sat on shelves in the UK while our kids beg for access. Please continue to share.
Mettre À Jour #1il y a 6 ans
Thank you so much for your support. We've got over 4,000 signatures in just 2 days! Please continue to share the link, as people are not always looking at social media and to reach a high percentage of your network you need to post repeatedly. The Petition is not just for Luis, it's for everyone with Cystic Fibrosis who can benefit from Vertex drugs. Shockingly, an estimated 200 eligible patients have died since Orkambi was licensed in the EU. They could have had more time with their loved ones.
