'It's just knowing there's something out there that can help her and she can't have it...'
The parents of a little girl living with cystic fibrosis say they are "heartbroken" NHS funding could be withdrawn for a 'miracle' drug. Annie Davies, four, was diagnosed with the life-shortening genetic condition at just three weeks old.
Nicola said: "Kaftrio was this glimmer of hope that Annie would lead a full healthy life. Hearing the news, we feel unimaginable heartbreak. We were hoping they'd bring the age down that treatment could start, not stop it altogether - the entire CF community is blindsided. Annie is already on a different drug called Orkambi, which is suitable for younger children, meaning she'd still be entitled to that even if the NHS withdraw it for future patients. But the parents had been waiting hopefully for her sixth birthday so she could move onto Kaftrio, which has been considered "life-changing" for many patients.
The National Institute for Health and Care Excellence , which advises NHS England on the cost effectiveness of treatments, published an update on the drug. It said that, although experts accept it is clinically effective, its high cost could mean it has to be axed. "Why should my child who has an inherited condition she never asked for not have a medication that's currently available? Children who are already six can have it but because she was born later she might not have access. It feels like discrimination. It's sick."
United Kingdom Latest News, United Kingdom Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
NHS Personnel Sent on 'Civility Courses' to Reduce Workplace Bullying CostsStaff are being sent on 'civility courses' to improve their relationships with colleagues with one hospital piloting the scheme, St George's, having spent £20,000 external consultants
Read more »
Off-duty NHS worker rushes to help ice hockey star after fatal injuryCardiothoracic nurse Paula Fereday was in the crowd when Adam Johnson suffered a cut to the throat in the game between Nottingham Panthers and Sheffield Steelers.
Read more »
Off-duty NHS worker saves man's life after throat cutCardiothoracic nurse Paula Fereday was in the crowd when Adam Johnson suffered a cut to the throat in the game between Nottingham Panthers and Sheffield Steelers
Read more »
Mum fears miracle drug for baby with cystic fibrosis will be taken off NHSJacqueline Buckland has spoken of her heartbreak
Read more »
Health chiefs cut NHS beds for addicts after drug consumption rooms approvedThe board has agreed to to cut hospital beds for people with alcohol and drug problems with plans also in the work to reduce the overall mental health hospital beds.
Read more »
Health Officials Slash NHS Beds as Controversial Drug Consumption Rooms ApprovedThe board has agreed to to cut hospital beds for people with alcohol and drug problems with plans also in the work to reduce the overall mental health hospital beds.
Read more »