Stephen O’Brien – 2014 Parliamentary Question to the Department of Health

Nov 1, 2022 admin Parliamentary Question, Stephen O'Brien

The below Parliamentary question was asked by Stephen O’Brien on 2014-04-10.

To ask the Secretary of State for Health, pursuant to the Answer of 24 March 2014, Official Report, column 120W, on haemolytic uraemic syndrome, for what reasons it was felt that further advice was needed on the overall cost implications, benefits and affordability of eculizumab; when it was first concluded that such further advice was needed; for what reasons the seeking of that advice was delayed until the National Institute for Health and Care Excellence took on responsibility for assessing highly specialised technologies; and if he will make a statement.

Norman Lamb

Ministers concluded that further advice was needed on the overall cost implications, benefits and affordability of eculizumab as, while Advisory Group for National Specialised Services (AGNSS) members were convinced of the clinical effectiveness of the drug, they noted the very high costs of the drug and the increasing cost profile for the National Health Service.

AGNSS was informed of this decision on 17 January 2013. On 7 February 2013, the Department conveyed its decision to the National Institute for Health and Care Excellence (NICE) so that NICE could begin preparatory work in advance of taking on formal responsibility for evaluating highly specialised technologies on 1 April 2013.

While NICE carries out its evaluation, the current interim commissioning arrangements by NHS England in line with the ‘Clinical Commissioning Policy Statement: Eculizumab for atypical haemolytic uraemic syndrome’ will remain in place. The policy statement is available at:

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