ATYPICAL HAEMOLYTIC URAEMIC SYNDROME

That this House notes with serious concern the decision by Ministers at the Department of Health not to recommend the national commissioning of Eculizumab for the treatment of atypical haemolytic uraemic syndrome (aHUS); further notes that aHUS is a very rare disease causing renal failure and life-threatening complications in children and adults; further notes that a submission to the Advisory Group for National Specialised Services (AGNSS) was made by Newcastle-upon-Tyne NHS Hospitals Foundation Trust and supported by the Renal Association, the British Association for Paediatric Nephrology, the British Transplantation Society and NHS Kidney Care; further notes that AGNSS recommended that Eculizumab should be routinely nationally commissioned for patients with aHUS and that Eculizumab would help save lives; is disappointed that the Government has not followed AGNSS' recommendation and has instead referred Eculizumab to the National Institute for Health and Clinical Excellence for further appraisal; believes that this will result in unacceptable further delays in accessing treatment for aHUS patients and their families; and calls on Ministers at the Department of Health to reconsider their decision and enter into formal negotiations with Eculizumab's manufacturer, Alexion, on establishing a patient access scheme.