- Written by Trevor Owens
- BBC Hereford & Worcester
image source, family photo
Bertie will be given the cystic fibrosis drug Kaftrio when he is two years old.
A Hereford toddler with cystic fibrosis could be refused life-changing medicine because of her age.
Bertie was just three weeks old when he was diagnosed with the disease and is currently taking several medications to control it.
Usually, when he turns two years old, he is entitled to the drug Kaftrio.
But the National Institute for Health and Care Excellence (NICE) said it was too high.
The government has published draft guidance saying it should no longer be offered to new patients on the NHS.
Bertie’s mother, Kate, said Bertie’s condition was having a major impact on his life, requiring multiple medications, coughing regularly and tiring easily.
His family also needs to be careful about who he comes into contact with in case he becomes infected.
He is receiving treatment in Hereford and Cardiff.
Improving quality of life
More than 10,000 people in the UK have cystic fibrosis. Cystic fibrosis is an inherited disease that causes a buildup of sticky mucus in the lungs and digestive system.
Kaftrio significantly improves lung function, helping cystic fibrosis patients breathe easier and improve their overall quality of life.
However, it costs the NHS around £150,000 per patient per year.
Bertie will be two years old in March, and Kate said: “If we can get Bertie on board in March, what we’re hoping is that he can’t take it back.”
“And I hope Bertie lives a long, healthy life and a good quality of life,” she added.
She said if they were unable to get Kaftorio on the NHS, it would be “financially impractical” to pay for it themselves.
She said she found it infuriating and pointed out the amount of money the NHS spends on cancer treatment.
“No one is talking about stopping that drug,” she said, but “if they don’t have that drug that seriously impacts their quality of life and longevity, the same goes for Bertie.” There will be repercussions,” he added. Please bring his medicine. ”
A public hearing on the matter is scheduled to conclude on Friday, with a decision expected in March.
