Parents’ legal fight with NICE to get ‘lifesaving’ care for children
THE family of two children with a terminal illness have launched legal action against government health body NICE over its rejection of ‘lifesaving’ treatment.
Oliver and Amelia Carroll, eight and six, from Poynton, have rare neurodegenerative condition known as Batten disease.
The disease has been kept in check by a treatment known as cerliponase alfa, provided on compassionate grounds by a pharmaceutical company.
But the company says it cannot provide this indefinitely and in February NICE decided not to recommend its use on the NHS as it was too expensive.
Now parents Lucy and Mike Carroll have instructed lawyers from Irwin Mitchell to apply for a judicial review of the decision on the grounds it breaches human rights legislation.
Lucy said: “It has been
heartbreaking to see what the children have faced and they have shown such courage through their lives.
“It is devastating to think that an effective treatment is not being made accessible on the NHS, particularly considering the impact it has had on them so far.
“This has to change and we are determined to fight until both Oliver and Amelia are able to access the life-saving treatment that they need.
“The NHS, NICE and the drug company BioMarin need to come to a reasonable compromise and continue to fund the treatment for these very vulnerable patients.”
Both children were diagnosed in 2015, but the older sibling Oliver had already lost the ability to walk and talk before starting the treatment. It has still considerably improved his quality of life though.
Amelia began the treatment before developing symptoms so can attend a mainstream school, learn new skills and enjoy gymnastics classes.
Without the treatment life-expectancy with Batten disease, which is estimated to affect 30 to 50 children in the UK, is six to 13 years. With it is said to be up to 60.
Irwin Mitchell say the NICE decision was on the basis of cost but cerliponase alfa is funded by health services in 19 other countries including Wales
Saoirse de Bont, from Irwin Mitchell, said: “How can you put a price on a child’s life?
“NHS treatment should be provided based on the clinical needs of the patient.”
“Our clients are understandably devastated by the decision and after reviewing all of the facts we have come to the conclusion that the process used to reach that decision may have been flawed.
“This treatment has made a huge difference to the lives of our clients and it is something they could also access in a host of other countries.
“There clearly needs to be a reconsideration.”
NICE declined to comment.