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NHS refuses to pay for drug to help ill mum, 31
A MUM from York says the NHS is playing with her life after officials said it was not “cost effective” to give her the drugs that would keep her alive.
Donna Exton, 31, from Haxby, suffers from a rare genetic disorder that has seriously damaged her kidneys and left her on the organ transplant list, but has been told the NHS will not fund regular doses of the drug eculizumab.
The drug would cost £400,000 a year but Mrs Exton’s only other option is a double liver and kidney transplant, which only one previous patient has survived.
Donna, who has a two-year-old daughter, suffers from atypical haemolytic uraemic syndrome (aHUS), which affects only 140 people in the UK and has left her so ill she has had to give up her career as a teacher in Selby.
She said the illness struck 18 months ago as she recovered from a bout of winter sickness, and it has since ravaged her body meaning she needs a kidney transplant and the expensive medication.
Despite the case being argued by her consultant, NHS North Yorkshire and York wrote to Mrs Exton last month saying the treatment “lacked sufficient evidence to demonstrate it was both clinical and cost effective.”
The family must now decide whether to appeal the decision.
Mrs Exton said: “My immune system is constantly on. My kidneys have completely failed and I'm having dialysis at home every night. I have given up my career as a teacher at Selby Community Primary. My life is half of what it was.
"I was just having lunch with my mother and then you get a letter like that and you just think they are playing with your life. I feel disappointment, anger and disbelief all rolled into one.”
She said the only other option was to undergo a risky double liver and kidney transplant, however she said it had been performed on only three other patients with aHUS and only one of them had survived.
“If I don’t get the treatment then it's just a case of keeping me comfortable,” she said.
Her husband, John, 30, said: “Without the operation it would mean she could have 10 years. If they did a kidney transplant the disease would still be there, but the drugs stop that.
“At the moment she can only do so much, but then needs to rest because she’s anaemic with it.”
The drug has been used to treat aHUS in America, since it was approved in 2011 It was also approved by the European Medicines Agency in 2007.
The drug is available in the UK but there are currently no recommendations by the National Institute for Clinical Excellence, for its use, either in cases of aHUS or paroxysmal nocturnal hemoglobinuria, another condition which it is used to treat and for which the drug has been used in Leeds.
A spokesman for NHS North Yorkshire and York confirmed there was no national NHS commissioning policy on the use of the drug.
He said: “Clinical trials have not been published and there is insufficient information to fully assess its safety.
“This treatment is not one which an individual PCT would expect to commission. It is subject to a national commissioning decision (expected sometime in 2013/14) which would apply to all eligible patients with this particular condition. We also have a responsibility to commission cost effective and affordable treatments for our population as a whole.
“From the information provided, members of the funding panel agreed that the use of this treatment lacked sufficient evidence to demonstrate it was both a clinical and cost effective use of limited NHS resources.”