At what cost? Life-saving drug withheld

Woman's kidney transplant is cancelled as minister refuses to fund anti-rejection Soliris

A woman awaiting a transplant for a rare condition that has destroyed her kidneys had her operation cancelled at the 11th hour because the Government refused to pay for the drug she needs to prevent the organ being rejected.

Up to 70 patients are in the same position as Dianne Illingworth, 41, who have been forced to put their lives on hold, and risk their condition deteriorating, while ministers and officials argue over whether the NHS can afford the drug, Eculizumab, which costs more than £300,000 per patient per year.

Ms Illingworth, from Newcastle upon Tyne, who suffers from atypical haemolytic uraemic syndrome (aHUS), an inherited condition, had been given a date for surgery in February after her husband, Lee, volunteered to be a donor. But the transplant was cancelled when the health minister, Earl Howe, rejected a recommendation from an expert committee that the drug be "routinely provided nationally".

Instead, Earl Howe referred the drug for further investigation by the National Institute for Health and Care Excellence (Nice), which took over responsibility for treatments for rare diseases in April.

Nice has yet to explain how it is going to assess drugs for rare diseases. A spokesman said an announcement would be made "within weeks". The drugs can be life-saving but are hugely expensive because they affect very small numbers of patients. They cannot therefore be assessed according to the usual cost-effectiveness threshold of £30,000 per patient per year (adjusted for quality of life) .

Some experts fear the move could signal a tough new approach to the funding of expensive treatments for marginal groups. But that would undermine the role of a national health system to pool the risks for the whole population in order to fund individuals with exceptional health needs.

Nice's verdict on Eculizumab, which is made by Alexion under the brand name Soliris, is not expected before summer 2014. Eculizumab costs £327,600 a year for an adult and £163,800 for a child with aHUS.

In the meantime, NHS England has established an interim scheme under which new patients – around 20 a year – will get the drug and existing patients already on it will continue to receive it. But patients not currently receiving Eculizumab, such as Dianne, will have to wait for Nice's decision.

Dianne has suffered kidney problems since her early twenties and had her first transplant in 2002. For seven years her kidney performed well but in 2009 she went into renal failure and was diagnosed with aHUS, which affects fewer than 200 people in the UK.

The condition causes damage to the kidneys, leading to irreversible kidney failure. Dianne was prescribed the new drug Eculizumab and her kidney recovered. "Within a week I was off dialysis and felt so much better. But after 18 months my kidney failed again," she said.

She was put back on dialysis while the search began for another donor. This time her husband, Lee, now 42, volunteered, and proved to be a good match. "It took me a long time to accept the idea that Lee would be the donor. Eventually, we were given a date for the surgery in February. Then in January the consultant called me in and explained the operation could not go ahead because the minister had refused to fund the drug.

"I was devastated. It had taken us a long time to come round to the idea – and then it was snatched away."

Dianne now has dialysis every night at home but it is not working well and she will soon have to transfer to hospital for sessions three times a week. She is severely anaemic, which causes fatigue. "My health is poor and I can't walk far."

Professor Tim Goodship, chair of aHUS Action, said: "A transplant transforms people's lives. This opportunity has been dangled in front of them and then withdrawn. I feel it is just cruel."

Madeleine Moon, Labour MP and chair of the All-Party Kidney Group, said: "It was heartbreaking to see the agony that people denied access to Eculizumab went through... The Government has made a heartless decision to allow existing trial and new patients access to the drug but not those who have been refused access on cost grounds by their hospital."

A Department of Health spokesperson said: "Patients currently receiving Eculizumab under individual funding requests will continue to do so. NHS England will consider any new funding requests until Nice has completed its assessment...

"We understand this news will be disappointing for patients... but we need to make sure the impact of Eculizumab on NHS resources is properly considered."

A spokesperson for NHS England, said: "Patients who are critically ill and who need Eculizumab urgently will receive it."

Life and Style
Steve Shaw shows Kate how to get wet behind the ears and how to align her neck
healthSteven Shaw - the 'Buddha of Breaststroke' - applies Alexander Technique to the watery sport
Arts and Entertainment
The sight of a bucking bronco in the shape of a pink penis was too much for Hollywood actor and gay rights supporter Martin Sheen, prompting him to boycott a scene in the TV series Grace and Frankie
tv
Sport
footballShirt then goes on sale on Gumtree
Voices
Terry Sue-Patt as Benny in the BBC children’s soap ‘Grange Hill’
voicesGrace Dent on Grange Hill and Terry Sue-Patt
Life and Style
ebookNow available in paperback
Arts and Entertainment
Performers drink tea at the Glastonbury festival in 2010
music
Arts and Entertainment
Twin Peaks stars Joan Chen, Michael Ontkean, Kyle Maclachlan and Piper Laurie
tvName confirmed for third series
Sport
Cameron Jerome
footballCanaries beat Boro to gain promotion to the Premier League
Arts and Entertainment
art
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Guru Careers: Software Developer / C# Developer

    £40-50K: Guru Careers: We are seeking an experienced Software / C# Developer w...

    Guru Careers: Software Developer

    £35 - 40k + Benefits: Guru Careers: We are seeking a Software Developer (JavaS...

    SThree: Trainee Recruitment Consultant / Resourcer

    £18000 - £23000 per annum + Commission: SThree: As a Trainee Recruitment Consu...

    Ashdown Group: UI Developer - (UI, HTML, CSS, JavaScript, AngularJS)

    £25000 - £40000 per annum: Ashdown Group: UI Developer - (UI, JavaScript, HTML...

    Day In a Page

    Abuse - and the hell that came afterwards

    Abuse - and the hell that follows

    James Rhodes on the extraordinary legal battle to publish his memoir
    Why we need a 'tranquility map' of England, according to campaigners

    It's oh so quiet!

    The case for a 'tranquility map' of England
    'Timeless fashion': It may be a paradox, but the industry loves it

    'Timeless fashion'

    It may be a paradox, but the industry loves it
    If the West needs a bridge to the 'moderates' inside Isis, maybe we could have done with Osama bin Laden staying alive after all

    Could have done with Osama bin Laden staying alive?

    Robert Fisk on the Fountainheads of World Evil in 2011 - and 2015
    New exhibition celebrates the evolution of swimwear

    Evolution of swimwear

    From bathing dresses in the twenties to modern bikinis
    Sun, sex and an anthropological study: One British academic's summer of hell in Magaluf

    Sun, sex and an anthropological study

    One academic’s summer of hell in Magaluf
    From Shakespeare to Rising Damp... to Vicious

    Frances de la Tour's 50-year triumph

    'Rising Damp' brought De la Tour such recognition that she could be forgiven if she'd never been able to move on. But at 70, she continues to flourish - and to beguile
    'That Whitsun, I was late getting away...'

    Ian McMillan on the Whitsun Weddings

    This weekend is Whitsun, and while the festival may no longer resonate, Larkin's best-loved poem, lives on - along with the train journey at the heart of it
    Kathryn Williams explores the works and influences of Sylvia Plath in a new light

    Songs from the bell jar

    Kathryn Williams explores the works and influences of Sylvia Plath
    How one man's day in high heels showed him that Cannes must change its 'no flats' policy

    One man's day in high heels

    ...showed him that Cannes must change its 'flats' policy
    Is a quiet crusade to reform executive pay bearing fruit?

    Is a quiet crusade to reform executive pay bearing fruit?

    Dominic Rossi of Fidelity says his pressure on business to control rewards is working. But why aren’t other fund managers helping?
    The King David Hotel gives precious work to Palestinians - unless peace talks are on

    King David Hotel: Palestinians not included

    The King David is special to Jerusalem. Nick Kochan checked in and discovered it has some special arrangements, too
    More people moving from Australia to New Zealand than in the other direction for first time in 24 years

    End of the Aussie brain drain

    More people moving from Australia to New Zealand than in the other direction for first time in 24 years
    Meditation is touted as a cure for mental instability but can it actually be bad for you?

    Can meditation be bad for you?

    Researching a mass murder, Dr Miguel Farias discovered that, far from bringing inner peace, meditation can leave devotees in pieces
    Eurovision 2015: Australians will be cheering on their first-ever entrant this Saturday

    Australia's first-ever Eurovision entrant

    Australia, a nation of kitsch-worshippers, has always loved the Eurovision Song Contest. Maggie Alderson says it'll fit in fine