NHS Drug Plea For Child With Blood Disorder

By Frazer Maude, Sky News Correspondent

The parents of a two-year-old girl with a rare blood disorder fear she faces a "lifetime of hospital visits and dialysis" unless the NHS funds an expensive new drug.

One day in every fortnight, Indie Smith is treated at London's Great Ormond Street Hospital for atypical Haemolytic Uraemic Syndrome (aHUS), a condition shared by only 140 others in the UK.

It causes abnormalities in the immune system that can lead to the development of blood clots in the filters of the kidney. It is incurable and can lead to fatal kidney failure.

She is treated with a drug called eculizumab, which has been given the brand name Soliris by its developers, US based Alexion Pharmaceuticals, and this allows her to live a relatively normal life.

Indie currently has her treatment provided by Alexion as part of a trial that ends in October.

Her problem is that the NHS will not continue to fund her treatment, at a cost of £250,000 a year, despite a Government advisory body recommending the drug be commissioned nationally.

The study by the Advisory Group for National Specialised Services (AGNSS), took two years, and concluded that: "Eculizumab would help save lives and improve the quality of life for children and adults with aHUS."

But the Department of Health has now referred consideration of the use of eculizumab to the National Institute of Health and Clinical Excellence (NICE).

Indie would need plasma therapy without the drug

Those with the condition, and their families, now fear another long wait for NICE to complete their research, with no guarantee that they will agree with AGNSS about the drugs benefits.

Without the drug, Indie, who has three older brothers, would need plasma therapy for four or five hours a day, five or six days a week.

"It's not right," said Indie's father Gavin. "It shouldn't be about the money. This Government can find money. It can't be about the money, you've got to give her a future."

Indie's mother Clare said: "It's horrible. We shouldn't have to be doing this. We shouldn't be worrying that my daughter is going to be confined to a hospital bed because we can't afford to give her the drug that allows her to be a normal little girl.

"Without it, it'll mean a lifetime of hospital visits and dialysis."

The Department of Health told Sky News: "We understand this news will be disappointing for patients who suffer from atypical Haemolytic Uraemic Syndrome, but we need to make sure NHS resources are being used wisely.

"We have asked NICE to further explore eculizumab's suitability for national commissioning and provide guidance to the NHS."

The Smiths are already planning for the worst - and end of the trial treatment, with no NHS funding to continue it - by fundraising and campaigning.

They have a website and have already visited Downing Street to ask for the Prime Minister to intervene and overturn the Department of Health's decision.

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