FARNHAM schoolgirl Maddie Turner has written an emotional and heartfelt letter to Prime Minister Theresa May, asking for new medicines that could prolong and enhance the lives of people in the UK living with cystic fibrosis, to be made available on the NHS.
In her letter 12-year-old Maddie, from Seale, writes: “Orkambi would enable a large proportion of the cystic fibrosis (CF) population to gain the upper hand in their battle for life.
“When I was three I was seriously ill with the condition. Recently, for the past few years I have been lucky enough to receive a medicine called Kalydeco. Since then, I haven’t been an inpatient at hospital.
“I am only very lucky enough to take Kalydeco because I have a particular type of CF. Only around 350 patients are eligible for Kalydeco.
Orkambi could help around 4,000 patients, but is not available to them.
“I feel very sad that so many people are not able to have an effective treatment simply because they have the ‘WRONG’ type of cystic fibrosis. That seems to me to be very unfair and a type of discrimination.
“Because you are prime minister, it is your job to make our country fair and possibly even safe for everyone.”
Maddie’s letter and hundreds of others from across the UK were handed in to 10 Downing Street on Wednesday, May 16.
Cystic fibrosis is a life-shortening condition that causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
The letter writing aims to raise awareness and support the campaign for access to new medicines for those with cystic fibrosis.
One of these is Orkambi, a precision medicine that nearly half of people with cystic fibrosis, including children aged six and over, could benefit from in the UK. 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.
For more details on cystic fibrosis and the trust’s access to medicines campaign visit www.cysticfibrosis.org.uk .