A Dudley woman has presented a petition on access to life-saving drugs to 10 Downing Street.
Carly Jeavons suffers from cystic fibrosis but has benefited from a life-changing new treatment called Orkambi.
Three years ago, Carly was being forced to leave work and be plunged into financial difficulties. Despite taking around 90 tablets and undertaking two hours of physiotherapy a day she had a lung function of around 44 per cent and spent two weeks in hospital every three months.
In September 2014, Carly was offered an opportunity to participate in a clinical trial for a new type of treatment that targets the genetic mutations that cause cystic fibrosis called Orkambi. This treatment has enabled Carly to halve the number of hospital visits she makes and go on holiday with her family for the first time.
Ms Jeavons has worked with the Cystic Fibrosis Trust on their ‘Stop the Clock’ campaign to improve access to new treatments, and their petition has attracted 15,000 signatures.
Ms Jeavons will be joined by her local MP Ian Austin who previously secured a debate in the House of Commons on access to new treatments. Under the current system new treatments are assessed based on clinical trials lasting just 24 weeks, but he has joined organisations like the Cystic Fibrosis Trust to argue that these short trials do not take account of the long-term benefits of new treatments.
Ian Austin said:
“Carly has done a brilliant job speaking up for 15,000 people who have backed this campaign for access to new treatments.
“There are lot of people like Carly who struggle to work, spend time with their family and do other things that the rest of us take for granted because they have to undergo hours of treatment every day.
“New treatments have offered Carly the opportunity to stay in work and live her life as she wishes, but thousands of people are set to miss out on these new drugs under the current rules.
“I want the Government to take this petition seriously and look at new rules on commissioning new treatments so they take account of the longer and more productive lives that these drugs offer people suffering from rare diseases.”