“So guess what’s been approved by NHS England today? What have we been fighting for?” said Beth to her anxious looking daughter, Isabelle. “In 30 days we’ll be able to get a prescription” Beth continued, as Isabelle broke down in tears of joy and palpable relief. Captured on video and posted on social media, this was 13-year-old Isabelle’s moving reaction to the announcement last week that the medication Orkambi (lumacaftor-ivacaftor) will be available on the NHS before Christmas to patients like her suffering from cystic fibrosis (CF).
CF, a genetic condition affecting over 10,000 people in the UK, causes breathing difficulty and recurrent chest infections. Half of those affected won’t make it past the age of 40. Orkambi slows progression and improves the quality of life of CF sufferers. You’d be forgiven for thinking its availability to children like Isabelle would be a certainty.
However, it’s taken four long, hard years of campaigning for NHS England to finally reach an agreement with Vertex - the US pharmaceutical corporation that holds the intellectual property rights to exclusively produce it. Vertex has a patent on Orkambi, and for the past four years they’ve charged over £100,000 per year for every patient treated (though a report from Just Treatment calculated that a generic could be produced for just £5000 a year). This is an excessive and unaffordable amount for the NHS and, in this time, hundreds of people with CF that have been denied treatment have suffered unnecessarily, and died.
