The Prime Minister has intervened in the case of a 12-year-old girl who has been denied potentially life saving drug treatment – despite it being locked in a cupboard in the hospital where she is treated.
Abi Longfellow suffers from a one-in-a-million kidney disease called Dense Deposit Disease (DDD), which stops the kidneys from filtering waste from the blood.
A petition set up by her parents, Andy and Jo Longfellow, to get her the drugs she needs has been signed by more than 160,000 people.
But health bosses will not currently pay for the Eculizumab drug, which costs £393,000 a year, because her condition is too rare to be covered by the national funding policy, but not rare enough to qualify as an exceptional case.
However, MP Andrea Jenkyns said that having met David Cameron last week, the Prime Minister had assured her that NHS England would review the case after Abi wrote a heartfelt letter to the Prime Minister asking for his help.
Mr Longfellow, 45, said the family only want the NHS to fund five dosages to see if the drug works.
He said: “It could mean Abi could be a normal teenager again. She would be able go back to school and hang out with her friends. It could totally transform her life.
“We just want £60,000 for five doses of treatment to find out if it is effective, then we will look at our options.
“It is difficult when other children around the world use the drug and I have seen that it works but they won’t give us the trial. That’s all we want.”
Abi was diagnosed with the disease aged 10 when a trip to A&E for a throat infection revealed she was suffering from the kidney disease.
She now spends 10 hours a day at home on a dialysis machine and it means she cannot return to school full time.
And the drugs which could help change her life are kept under lock and key in Leeds General Infirmary where Abi is treated.
A spokesperson for NHS England said: “We have been in contact with the family and will have further discussions with them to make sure that they are given the most up to date information.”
To sign the Longfellow family’s petition log on www.change.org/p/david-cameron-mp-allow-the-nhs-to-give-abi-longfellow-her-life-saving-medicine.