FAMILIES are fearing for their kids’ lives after the NHS was told “miracle” cystic fibrosis drugs are now too expensive.
Parents whose children could benefit from the £100,000-a-year treatments face an agonising wait to learn if the health spending watchdog will ban them on cost grounds.
HandoutGeorgia Burchell, pictured with Gia, said: ‘It feels like someone’s putting a price on our daughter’s life’[/caption]
The drugs are not now considered “an acceptable use of NHS resources” by the National Institute of Health and Care Excellence (Nice).
People already on Kaftrio, Orkambi and Symkevi, which slow mucus build-up and lung damage in the genetic condition, will be allowed to keep taking them.
But Georgia Burchell, 24, of Nuneaton, Warks, whose daughter Gia, 15 months, could benefit, said: “We’ve been promised this, but now it’s up in the air.
“It feels like someone’s putting a price on our daughter’s life.”
Nice said it was assessing the drugs’ “cost-effectiveness” to ensure taxpayers “continue to get value for money”.
John Stewart, a director at NHS England, said: “NHS England remains committed to ensuring that these life-changing cystic fibrosis medicines are available to everyone who may benefit, now and in the future.”
Helen Knight, director of medicines evaluation at Nice, added: “We are evaluating the cost-effectiveness of these cystic fibrosis medicines to ensure that taxpayers continue to get value for money.
“Existing patients and new patients who are started on treatment while the evaluation is ongoing will continue to have access, irrespective of the outcome.”