Telford mum welcomes cystic fibrosis drug debate in Parliament
The fight to make a drug available on the NHS to help people battle cystic fibrosis will be taken to Parliament later this month – to the delight of a Telford mother whose son was diagnosed with the condition.
Emma Hughes, aged 36, and her husband Lee, 39, have done huge amounts to try and raise awareness of the condition and raise money for research since their son Chester was diagnosed.
They said a new drug called Orkambi offered new hope of a cure for sufferers.
Even though their son has a type of cystic fibrosis that means that he is unlikely to benefit, Mrs Hughes said she would welcome any progress to help others.
A petition calling for the change was signed by more than 107,000 people in the space of just 11 days and the matter will now be debated at Westminster Hall on March 19.
Mrs Hughes, of Arleston, said: “This has been a long fight and despite my son not being the right mutation for Orkambi, I am passionate about this fight as there are other drugs from the same manufacturer coming through that could help my son.
"Any deal with the Orkambi maker Vertex would mean securing potential life saving drugs for my son.
“I think it’s good news it is being debated in Parliament. I can see the NHS is struggling for money but it’s frustrating when there’s something out there that can help your children and you can’t access it.”
Chester, who will turn three in May, was diagnosed with the condition when he was a week old and spent much of his first year in and out of hospital.
He spent the first three months of life in Birmingham Children’s Hospital, has had three unplanned two-week IV antibiotic admissions for infection, a bronchoscopy to check for infection and attends clinic frequently at Princess Royal Hospital in Telford.
His parents serve in the army and only moved to their home in Arleston from Aldershot a month before Chester was born.
The National Institute for Health and Care Excellence announced a decision to reduce the use of the drug on the NHS because of uncertainty around long-term value and impact, and therefore cost-effectiveness.
Mrs Hughes said when Chester was diagnosed with cystic fibrosis she became part of an online community of families living with loved ones who battle the same condition.
She said: “We have determination like no other, taking on challenge after challenge in our children’s names, finding strength each time to continue because we know our children have no choice than to get on with it.
“We dig deep to find the strength to take on the biggest of battles and we have the will, to want, to win and we do all this side by side, together every step of the way.
“This community has been waiting for something special, for something to change cystic fibrosis, so to be told that something is too expensive and not cost effective just isn’t going to work. You won’t be surprised to hear that we aren’t prepared to take that as an answer.”
Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases.
It is caused by a defective gene and, as a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.
The Cystic Fibrosis Trust says Orkambi is proven to slow decline in lung function by 42 per cent and cut the number of infections requiring hospitalisation by 61 per cent.