Parents criticise plan to axe cystic fibrosis drugs on 'cost' grounds

• Video report by Michael Billington

Parents of children with cystic fibrosis (CF) say a "price tag" is being put on their lives after proposals were announced to axe NHS funding for some drugs.

Medication is currently available on the NHS which can prolong the lives of people with the inherited condition.

But the National Institute for Health and Care Excellence (NICE), which guides how the health service operates, has withdrawn its recommendation for a number of drugs on cost grounds.

Melissa Jenkinson's baby son, Lennox, may only survive into his 20s without treatment.

The youngster, from Rotherham, South Yorkshire, was in line to receive a drug called Kaftrio, which is seen by many as the closest thing to a cure.

Melissa said: "That was the only glimmer of hope in a dark stage of our lives, thinking one day he was going to be put on these medications. I never expected to hear such tragic news that it could be taken away because of a price tag. It's just awful.

"Without this medication we know it means that their lives are going to be really challenging and full of pain and fighting horrible infections.

"[To] look at your baby and know there's medication out there that's going to save their life and to be told that it's too expensive for the NHS to buy – it's absolutely devastating."

Cystic fibrosis is an inherited condition that causes breathing and digestion problems.

It affects about one in every 2,500 babies born in the UK.

The lungs of those with the condition become damaged over a number of years and may eventually stop working.

NICE's latest draft guidance said it would not recommend the use of Kaftrio, Symkevi and Orkambi for new cystic fibrosis patients. A consultation is taking place until 24 November.

Existing patients will continue to receive the drugs.

Callum and Aimee Faulkner, from Maltby, South Yorkshire say treatment would give their daughter, Harper, the chance to live a "normal, healthy life", possibly into her 80s. At the moment she may survive only into her 30s.

Callum said: "If you're going to be born with cystic fibrosis, now is a very good time to be born with it because of the medicines being developed.

"You just have to look at the kids. Put yourself in their shoes."

Aimee said: "It's our children's lives that we are trying to be the voice for and how do you [put into words what it means to have your child still here into their 30s.

"Please give our children the future they deserve, because they deserve to have a full life.

"No child deserves a price tag."