Hope for Abi as NHS could fund life-saving drugs

andy and jo longfellow with daughter abi aged 12 ..nhs refuse kidney drug treatment ,her dad is to give her a kidney transplant thou a drug to block disease is being refused so the operation is on hold.....also pictured elder sister jess
andy and jo longfellow with daughter abi aged 12 ..nhs refuse kidney drug treatment ,her dad is to give her a kidney transplant thou a drug to block disease is being refused so the operation is on hold.....also pictured elder sister jess

Brave Abi Longfellow is one step closer to getting the life-saving drug denied to her by the NHS.

The 12-year-old suffers from a one-in-a-million kidney disease called Dense Deposit Disease (DDD), which stops the kidneys from filtering waste from the blood.

Abi Longfellow outside the room where the drugs she needs is kept.

Abi Longfellow outside the room where the drugs she needs is kept.

But health bosses are refusing to 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.

And the drugs are kept under lock and key at Leeds General Infirmary where she is treated.

Abi, of Robin Hood, has now been given new hope after a case review by the National Institute for Health and Care Excellence (NICE).

The watchdog published new evidence showing 70 per cent of patients had a positive reaction to the drug.

The report said: “Eculizumab improved or stabilised signs of C3 glomerulopathy DDD in seven cases.

“A partial response was seen in one case, and it was ineffective in two cases.”

And the evidence is now being considered by NHS England, who could reverse their decision and give Abi the drug.

A decision is expected to be made within the next few weeks.

Her dad Andy Longfellow said: “This is a big milestone towards getting the drug, not only for Abi but for other sufferers aswell.

“The drug has never been looked at by NICE before so the findings are encouraging.

“Abi was over the moon when she heard the news but we know this is only the first step. It could change her life.”

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.

A petition was set up by her parents, Mr Longfellow and his wife Jo, to get Abi the drugs she needs, and it has been signed by almost 200,000 people.

And last month Abi wrote a heartfelt letter to Prime Minister David Cameron asking for his help.

If funding for the drug was granted, Abi would undergo a kidney transplant donated to her by Mr Longfellow.

She would then receive the injections every two weeks but it could help Abi to live a relatively normal life.