Ian Austin, MP for Dudley North is holding a round table discussion in Parliament to press for a new treatment that could improve both the length and quality of life for people suffering with Cystic Fibrosis.
The roundtable will take place on Wednesday 28th Feb, which is also Rare Disease Day. Austin will be joined by MP’s from all partys, the CEO of the Cystic Fibrosis Trust David Ramsden and representatives from Vertex Pharmaceuticals.
Cystic Fibrosis is the largest and one of the most devastating rare diseases in the UK with around 10,400 patients.
Austin’s aim is to change in the way that new drugs, such as Orkambi, are assessed. Under the current system new treatments are assessed based on clinical trials lasting just 48 weeks, but organisations like the Cystic Fibrosis Trust are arguing that these short trials do not take account of the long-term benefits of new treatments.
Austin’s campaign is inspired by two of Austin’s constituents, Samantha Carrier and Carly Jeavons.
Samantha Carrier is campaigning to raise awareness after her young daughter Daisy was diagnosed with cystic fibrosis. Samantha spends hours every day giving her daughter extra care and support making work impossible, and she is campaigning for access to new drugs and treatments so daughter can live as full a life as possible.
Carly Jeavons suffers from cystic fibrosis but has benefited from the clinical trial of a new treatment called Orkambi. Three years ago, Carly was faced with a choice between leaving work and facing financial difficulties or staying in work to the detriment of her health. 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.
Ian Austin said:
“I’ve been so impressed by the inspirational courage and determination Samantha Carrier and Carly Jeavons have shown with their campaigning.
“This roundtable is the next step of the campaign to get the NHS to change the rules on commissioning new treatments so they take account of the longer and more productive lives that these drugs offer
“This is exactly how politics should work. It’s my job to listen to my constituents and stand up in Parliament to push for changes to help them. People like Carly Jeavons 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.”