THE family of a seriously ill York mum who has been refused a drug which could save her life has called on the Government to speed up a decision on whether to pay for the treatment.
John Exton, husband of 31-year-old Donna Exton, wants National Health Service commissioners to fast-track their decision on routinely funding the drug eculizumab, for people with the rare condition atypical haemolytic uraemic syndrome (aHUS). It affects about 140 people in the UK, including Mrs Exton, whose case was reported in The Press last week.
The couple are expecting a decision from the Advisory Group for National Specialised Services (AGNSS) after it was presented with evidence early last year from clinical trials conducted by Alexion, the makers of eculizumab, who say the drug is proven for the treatment of aHUS. The medicine, however, costs £400,000 a year.
Mr Exton, 30, said: “I would call on those responsible to make a decision as soon as possible. This drug could save my wife’s life.”
In December, NHS North Yorkshire and York refused to fund the use of eculizumab, which Mrs Exton would need to take for life in the event of the kidney transplant which she also urgently requires.
Mr Exton’s calls have been backed by bosses at Alexion.
Irving Adler, head of corporate communications, said he had “no idea” why the process was taking so long.
He said: “If I was looking at this from the outside, I would be asking why the minister hasn’t made a decision. We are absolutely convinced the drug will be of benefit.”
Mark Barrett, country manager for the UK and Ireland, pointed out the drug is approved in mainland Europe and the United States, for the treatment of aHUS.
He said: “I don’t think there can be any question on the clinical efficacy of the drug.”
It is understood if the NHS agree to fund the drug nationally, a treatment centre would be set up in Newcastle for aHUS sufferers.
A spokesperson for AGNSS said: “The application for the national commissioning of the drug Eculizumab has been carefully considered by the Advisory Group for National Specialised Services (AGNSS) using the agreed criteria.
“These include consideration of the short and long-term clinical benefits, comparisons with alternative treatments, affordability and referral pathways. AGNSS’ advice is currently being considered by Ministers who will then make a final decision.”