Mother's battle for drugs to help daughter

A PLYMOUTH mother fears her daughter will die at a young age if NHS chiefs stop funding for a lifesaving drug.

- WILLIAM TELFORD

Rose Blatchford is campaigning for the medicine, Kaftrio, to be made available so little Matilda can live a long and happy life.

The four-year-old, who goes to Salisbury Road Primary School, was diagnosed with cystic fibrosis, a lifelimiting genetic disease that causes respiratory infections, just three weeks after being born.

New medications have given cystic fibrosis sufferers fresh hope, with one drug, Kaftrio, billed as “the closest thing to a cure”. However, sufferers and their families were stunned when NICE (National Institute for Health and Care Excellence) said it may not be able to fund Kaftrio and another medication, Orkambi, on the NHS due to their cost.

No decision has been made and a consultation is underway, but NICE is looking at the cost-effectiveness of the medicines. The cystic fibrosis community has begun a fightback, and is about to launch a petition.

Matilda stars in a “save us” social media campaign and her mother, Rose, said: “My daughter will die younger as a result of this decision. It is as simple as that.

“To know that my daughter may not be eligible for this medication is too much to bear. The consultation process has begun and we need to apply pressure to those with the power to change our children’s lives. Please help.”