Give me drug to save my life pleads girl, 12
A GIRL of 12 has begged the Prime Minister to let her have a potentially life- saving drug – which is locked away in a cupboard at her hospital.
Abi Longfellow has a rare kidney disease which could prove fatal within five years and is being treated just yards away from the drug.
But a cruel quirk of NHS policy means that Abi, from Wakefield, West Yorkshire, is denied the drug even though other patients with more common kidney conditions receive it.
Abi suffers from dense deposit disease, a rare disorder which stops the kidneys filtering waste. She has 10 hours of dialysis a day at Leeds General Infirmary and has endured blood transfusions and chemotherapy.
Now she has written a heart- rending letter to David Cameron begging him to amend the rules to give access to the drug eculizumab.
The letter reads: “My life- saving medicine is in my hospital and I cannot use it to save my kidneys. Mr Cameron, why is that fair? Other children with other rare disease like me are receiving eculizumab today.
Compassion
“I’m a 12- year- old English girl and if I lived in Ireland, Europe, America, Canada etc, I would get the medicine without hesitation. So why am I being disadvantaged in my own country?”
The loophole has emerged because Abi’s condition is too rare to be covered by NHS England’s drug- funding policy.
Her consultant Eric Finlay treats three other children in the same hospital with the medication because they have more common complaints which are covered by the policy.
And the drug’s manufacturer, Alexion Pharmaceuticals has refused to drop the £ 136,000- a- year price, making it almost impossible for Abi’s family to buy it privately.
But Abi’s parents Andrew, 44, and Jo, 43, have pointed out that the drug could become as cheap as paracetamol by 2020 when the company’s licence expires.
Jo said: “Knowing that the drug sits in the hospital and Abi can’t have it is horrendous. I think the drug company needs compassion for a 12- year- old.”
Consultant paediatric nephrologist Mr Finlay, 46, said: “The Government doesn’t see young children in pain in a hospital bed or the tears in the eyes of their parents who know there is a drug just metres away which could save their child.”
Common illnesses are usually on a list compiled by NHS England along with the drugs approved to treat them. If an illness is rarer and is not on the list, a doctor can make an independent funding request from a fund for “exceptional clinical cases”. But if a complaint is so rare that it is the only one of its kind in the country, it is difficult to get cash from the fund.
An Alexion spokesman said: “We take all requests for compassionate use very seriously. We evaluate the medical need of each request for eculizumab case by case and work with physicians to ensure that it is only used where there is sufficient evidence that the potential benefits outweigh the risk for patients.”
NHS England North said: “Medical experts decided that it would not be right to fund a treatment that hasn’t been proven to work for patients in these circumstances.”
Andrew and Jo will now try to raise enough cash for four or five doses to prove the drug works for Abi.