A 12-year-old girl who has been denied potentially life saving drug treatment, has prompted calls for a complete overhaul of NHS drug funding policy.
Abi Longfellow's kidney disease is too rare to be treated with standard drug funding, but is not rare enough to qualify as an exceptional case and the funding that would bring.
ITV News Correspondent Damon Green went to meet Abi and her family in Wakefield.
Dense deposit disease is a rare kidney disease that stops the kidneys from correctly filtering waste from the blood.
Abi's family say they do not want the NHS to fund a whole year of the treatment, but just a few months to see if the drug works for her.
The Solaris drug costs around £393,000 a year.
Why can't we at least trial it with five doses/ If it doesn't work then it doesn't work.
Abi spends 10 hours a day undergoing medical treatment and her parents say they just want her to lead a normal life and believe with the drug that would be a possibility.
She's going to get on with her life, she can start living her life. She can start being a teenager again and getting out with her friends and just doing day to day normal, normality.