A Wigan girl is testing an experimental cystic fibrosis drug that was deemed too expensive for the NHS.
Robyn Ashcroft is part of a clinical trial for Orkambi, a drug which targets defective proteins that create gene mutations, which in turn cause cystic fibrosis (CF).
The 20-year-old from Pemberton was specifically chosen to test the drug due to the severity of her condition.
“It’s only given to people with a lung capacity under 30 percent. My capacity is 26 percent.
“It affects the proteins in the gene that blocks our airways, and makes it easier to break down the mucus.”
Robyn was diagnosed with CF at just 10 months old and currently has to take 20 different pills a day. She is hoping Orkambi, a combination drug of medicines called lumacaftor and ivacaftor, will become available to everyone in the UK with the disease after the year-long trial comes to an end next year.
The potentially life-changing drug is licensed in America, Germany and France, but has already been knocked back once by health officials for being too costly.
Last summer, the National Institute for Health and Care Excellence (NICE) rejected Orkambi for use in England because of “uncertainty around long-term value and impact and cost-effectiveness,” despite it being proven to improve lung function.
The UK health watchdog turned it down after finding that the drug would cost £104,000 per patient for every year of treatment.
Former Cystic Fibrosis Trust chief executive Ed Owen said: “We are very disappointed by this decision.
“This issue is about people’s lives and there is no time to lose.”
But Robyn and her colleagues at Jo and Co hairdressers in Pemberton are hoping to raise awareness of the wonder drug, and the important issue of making it available to all on the NHS.
An event has been planned to coincide with Cystic Fibrosis Awareness Month, which is held throughout May every year. The event at the Ravine Club in Pemberton on May 14 will see all the typical fun day tropes and more, including a dance troupe, singers, fancy dress and face painting.
It will all be in aid of making people aware of the day-to-day battles faced by the 10,800 people in the UK diagnosed with CF. Tickets are available on the door or in advance by calling Jo and Co on 01942 217166.