A child has written a heartfelt letter to the Prime Minister asking for new medicines that could prolong his life to be made available on the NHS.
Seven-year-old Luis Walker from Horam is part of a national campaign calling for the life-extending Cystic Fibrosis drug.
Luis was diagnosed with cystic fibrosis (CF) at three-weeks-old, a debilitating and life-shortening condition that seriously impacts quality of life.
Luis’ letter is one of hundreds of children across the UK whose hand-written letters will be handed in to 10 Downing Street on Wednesday (May 16).
In his letter, Luis wrote, “Please can you give Orkambi to me so I will feel much better and won’t have to spend so much time in Hospital.”
Orkambi is a precision medicine that nearly half of people with cystic fibrosis, including children aged six and above, could benefit from in the UK.
While conventional cystic fibrosis treatments target the symptoms, precision medicines tackle the underlying genetic mutations which cause the condition.
Orkambi is not a cure, but it has been found to slow decline in lung function – the most common cause of death for people with cystic fibrosis.
It has also been shown to reduce chest infections requiring hospital treatment by up to 61 per cent.
Orkambi received its European license in November 2015 and in June the following year the UK Government agency the National Institute of Health and Care Excellence (NICE) recognised Orkambi as an important treatment – but did not recommend the drug on grounds of cost-effectiveness.
People living with cystic fibrosis experience a build-up of thick, sticky mucus that causes chronic lung infections and progressive lung damage.
Daily life itself can be a struggle and people with the condition face a huge burden of daily treatments, with the most basic tasks causing such breathlessness that oxygen is required to help them breathe.
David Ramsden, Chief Executive of the Cystic Fibrosis Trust, said, “Cystic fibrosis is a terrible condition.
“Significant advances in medical science mean new precision medicines are available or in development that have the potential to transform the lives of people with cystic fibrosis and we urge the Prime Minister to ensure that they are available for the thousands of children and adults who have been waiting far too long.”
For more details on cystic fibrosis and the Trust’s access to medicines campaign visit