Plea from parents of children with cystic fibrosis to re-think axing a drug which helps prolong lives
A Leeds mum say's a child's life is priceless as treatment could be axed
There's an urgent plea from parents of children with cystic fibrosis, to re-think axing a drug which helps prolong lives.
Medication currently on the NHS can prolong the life expectancy of people with cystic fibrosis.
Kirsty Watson, from Leeds has a six-year-old daughter called Nelly. She's just started on the treatment and has been told it will could add an extra 50 years onto her life expectancy.
She was approved the drug Kaftrio which she waited a long time for and will continue to get free on the NHS but if it's axed, other children will miss out.
Kirsty told us: "It breaks my heart to know that there’s all these children being born who’ve got this disability through no fault of their own, and they’re not going to be given the same opportunities in life that Nellie’s got.
“It’s literally condemning them to a life of illness and hospital stays and just watching them deteriorate and no one wants to see their child in that way.”
The National Institute for Health and Care Excellence (NICE), which guides how the health service operates have launched the consultation.
Helen Knight, the director of medicine evaluation said they are "evaluating the cost-effectiveness of these cystic fibrosis medicines to ensure that taxpayers continue to get value for money after interim access where further data was collected."
They explained Kaftrio costs ÂŁ200,187 per year, per person at its list price, but it is currently available through an interim access scheme which includes a discount to the list price.
Cystic fibrosis is a condition that causes a build up of sticky mucus in the body causing problems with breathing, digestion and weakening of the immune system.
The consultation will conclude on November 24th.