I have been greatly affected by the plight of one of my constituents, who has a child recently diagnosed with cystic fibrosis. It is a debilitating and life threatening genetic disease which affects approximately 1 in 2500 babies born in the UK each year. Having a child is a blessing and a wonderful, life-affirming event; no-one expects their baby to be born with a lifelong illness and the news that such a diagnosis can bring is devastating and can be very stressful.
Sadly, to date, there is no cure for this disease and the life expectancy for a person with cystic fibrosis is just 36 – 47 years old, with the main cause of death being restricted lung function. That statistic hit me quite personally; I’m 37 years old. When I was a child, I met and spent time with other children of my age who suffered from cystic fibrosis; knowing that I’m within that life expectancy was quite a sobering thought.
But medical research advances all the time. A new drug called Orkambi has been developed and has passed testing in the USA. The trial of this drug has had astonishing results. It does not help all sufferers, just those with a specific genetic mutation – roughly half of all sufferers. For those it helps, it is proven to slow down the decline of lung function by up to 42%. The Cystic Fibrosis Trust has conducted a study which shows that some 2834 people in the UK could benefit from this new drug. Other new medications are in the process of clinical trials.
So what’s the problem? Sadly, it’s the age-old story: Orkambi is an expensive drug and it is not currently available on the NHS. This excuse, however, is unacceptable. Even the National Institute for Clinical Excellence admits that it is ‘clinically effective and important for managing cystic fibrosis’, whilst refusing to fund it. As a consequence medications such as Orkambi are not available to sufferers and in turn they are denied a longer and more comfortable life.
Politicians may clash when it comes issues regarding the NHS. Indeed, it is often because of political interference just as much as due to underfunding that the NHS has found itself in difficult times: constant restructuring, new management, new contracts, to name but a few. Many times in the past I have argued that the NHS needs to prioritise the patient and spend taxpayers’ money more effectively, and to stop wasting precious funds on private finance initiatives.
I would like to highlight the amazing work done by the Cystic Fibrosis Trust, and their Stopping The Clock campaign. A petition to make Orkambi available on the NHS has quietly attracted over 100,000 signatures and will be debated in Parliament on March 19th. Can public pressure actually make a difference? I’d like to think so.