Exhausted but finally home after a day at Westminster to protest about Orkambi - a ground-breaking drug that could save the lives of thousands of young people with Cystic Fibrosis. It's available in the USA, France, Germany & Ireland, but not in the U.K. This has to change. Read more here.
Today was great, excellent company, and something I am proud to be part of, and whilst it's not a drug that will directly help Isaac (due to his rare mutation) I believe it will open other doors. Orkambi's UK list price is some £104K per patient, per annum, which NHS England simply cannot afford, but these protests (we hope) will restart negotiations with the pharmaceutical company.
Many young people who could benefit from this drug will lose valuable lung function the longer this goes on, or worse still, die waiting.
