After 14 cruel months of false hopes, Abi, 13, won't get the NHS drug that could save her life after a transplant.
With incredible bravery she is going ahead with the op anyway... and battling to raise £100k to stay alive
Doctors say you can get an infection and die after 2 yrs on dialysis. I have been on it for 3. I must do something If the NHS won’t help I have to take my own chances
SICK schoolgirl Abi Longfellow has bravely decided to go ahead with a kidney transplant, despite being denied the drug that could keep her alive afterwards.
Hope vanished when NHS funding bosses said the £ 137,000- a- year wonder- medicine Eculizumab is too expensive.
Now the courageous 13-year-old has taken matters into her own hands.
Aware she is living on borrowed time, she has decided to go ahead with a transplant under no guarantee it will work because the drug she needs to keep her alive will not be funded.
Without the breakthrough drug, Abi runs a huge risk of her one-in-a-million disease destroying the new organ.
But if she stays on dialysis any longer she could develop an infection which could quickly claim her life.
Speaking from her bed at home, Abi said last week: “I’m fed-up and tired.”
Using her cardigan sleeve to brush away tears, she went on: “Every night I’m hooked up to dialysis and I’m awake until the early hours trying to sleep with the whirr of machines.
“I struggle to do the things most of my friends do – see my friends, shop, play sport. I can’t even go to school. It’s not a life.
“I want a future which involves a career and travelling and I can’t stay on dialysis for ever.
“The doctors said I can get an infection and die after two years on the machine.
“I have almost been on it for three. I need to do something.
“People say I’m brave but I don’t have a choice. If the NHS won’t help me I have to take my own chances. I’d rather have tried.”
Sometime next month Abi’s name will be added to the organ donation list and she will await a call to go in for her surgery.
Today the Sunday People launches an urgent appeal to fund the first year of Abi’s drug to give her a real chance of life.
If she can secure enough of the vital medicine to see her through the first few months after her transplant, she can be reconsidered for funding again next year.
We are asking our readers to raise £100,000 to add to £30,000 you have already donated to keep Abi alive in a race against time.
Robbed
Abi is a resilient young woman. She has had to be.
She was 10 when diagnosed with a rare kidney ailment called Dense Deposit Disease which stops the kidneys filtering waste from the blood.
The condition has robbed Abi of a normal childhood and left her parents Jo and Andy angry and frustrated as they battle the NHS to give their daughter a drug already prescribed to other kidney patients.
A medical loophole means Abi’s condition is too rare to be prescribed Eculizumab, but not unique enough to be considered a special case.
As a result of our campaign, the then-Prime Minster David Cameron stepped in to order an urgent review of Abi’s case in May last year.
Yet it took the NHS another 13 months to deem the drug suitable.
Cruellest
It was a victory worth waiting for and Jo and Andy believed the medicine would be rubber-stamped at a special commissioning meeting – but their hopes were shattered. Abi was overwhelmed by the news and buried her head in her hands. Crying, she asked: “How special does my case have to be?
“There’s only me and another dense deposit patient in England who need Eculizumab so why can’t we have it?
“I know it’s expensive. I’m not daft. But it’s not like I’m the first patient in the world to ask for it. It’s prescribed to other kids who have had kidney transplants with different conditions.”
Perhaps the cruellest part of young Abi’s situation is that the drug has been commissioned for other illnesses in the UK and also for dense deposit disease across the border in Scotland. The drug was kept locked in a cabinet just yards from her bed in Leeds General Infirmary while she was in for treatment.
But now Abi has mentally prepared herself for surgery with no clue if it will bring the end of her life nearer or push it further away.
Her only alternative is to go on to a different type of dialysis called hemo which is delivered though a line inserted into a major vein.
Abi, of Wakefield, West Yorks, said: “I had hemo when I was first diagnosed and it was terrible.
“I lost consciousness a few times and I had vice-like headaches which were awful. It was delivered through a line in my neck which was also incredibly painful.
“If I have to go into surgery to have a line put in my neck and then face having hemodialysis then I might as well have the transplant.”
Sitting by Abi’s bed where she spends up to 13 hours hooked up to machines every night, mum Jo and dad Andy say they are incredibly proud of her.
Jo, 45, said: “The transplant is a decision Abi had to make for herself, but she’s been backed into a corner.
“She’s been on her current type of dialysis for almost three years and patients run the risk of a serious, potentially deadly infection beyond two.
“Her consultant says it’s time now to go for the transplant and we have to put our faith in him, but without the drug we are running the gauntlet.
“It’s heartbreaking but we have no alternative.”
Leading lawyer Yogi Amin, who won the right for breast cancer patients to be prescribed the vital drug Herceptin, has taken up the family’s case for free.
Yogi, of Irwin Mitchell, is preparing papers to take the NHS to a judicial review at the High Court.
In the meantime the family’s only hope is to raise funds for Eculizumab. Charity worker Jo said: “It’s now time to put our pride aside and ask people for help. Abi will go on the transplant list next month.
“Once that happens we could get a call any time.
Torture
“How horrible that the NHS is willing to put at risk not just Abi, but the organ that someone has donated so she can live.
“None of it makes any sense when there are other kidney patients, albeit without dense deposit disease, who are being given the drug.” More than 200 English patients with a condition called atypical hemolytic-uremic syndrome, which causes abnormal clots to form in the kidneys, already receive Eculizumab.
Jo said: “The commissioning board said it could only fund drugs with the greatest clinical benefit and lowest cost, yet it’s been proven this medicine could save our daughter’s life.
“The NHS has toyed with us, drawing up reports and consultations only to let Abi down at the last minute.
“It’s like a form of torture. Well, they can torture me but I won’t let anyone torture my daughter.”