‘Ruling means my girl faces death sentence’
A WORRIED mother has warned that her baby daughter faces a “death sentence” if health chiefs fail to give her Kaftrio.
Mum-of-three Rula Samara-Sellers, 37, was hoping her five-month-old girl Layla would have access to the cystic fibrosis pill when she turned two – the earliest age the NHS can allow it to be taken.
But last autumn’s provisional ruling from Nice deemed Kaftrio too expensive for any new young patients. If that is rubber-stamped, Layla will be denied the drug on the NHS.
Rula, of Leeds, said: “It’s absolutely disgusting. If they did say that she was not entitled to it when two, they are literally giving her a death sentence.
“She is sick and now you’re saying that it’s too expensive – and her life is too expensive?
“So she will continue having a terrible quality of life for the sake of saving money for the NHS. They will be providing everyone in the community with a death sentence and saying their lives are not worth it. “This is inhumane, they cannot decline it.”
Rula said she and her husband Connor Sellers, 31, left, endured the “worst days of our lives” when their daughter was given the devastating cystic fibrosis diagnosis as a newborn. Layla now requires constant care and has made numerous trips to the hospital due to bacterial infections. But her parents believed Kaftrio was on the horizon and would help her for the rest of her life. Rula added: “The only thing that was keeping us going was that she would be entitled to Kaftrio.
“I will fight tooth and nail to make sure it’s approved in the UK.
“I will work with the Cystic Fibrosis Trust and they will support me all the way.”