Early day motion 1069

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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.

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Total number of signatures: 37

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Showing 37 out of 37

Name Party Constituency Date Signed
Begg, Anne Labour Party Aberdeen South 24.04.2013
Bottomley, Peter Conservative Party Worthing West 13.02.2013
Brooke, Annette Liberal Democrats Mid Dorset and North Poole 04.03.2013
Caton, Martin Labour Party Gower 13.02.2013
Dobbin, Jim Labour Party Heywood and Middleton 26.02.2013
Durkan, Mark Social Democratic and Labour Party Foyle 12.02.2013
Flynn, Paul Labour Party Newport West 14.02.2013
George, Andrew Liberal Democrats St Ives 12.02.2013
Hamilton, Fabian Labour Party Leeds North East 10.04.2013
Hancock, Mike Liberal Democrats Portsmouth South 25.02.2013
Harvey, Nick Liberal Democrats North Devon 28.02.2013
Heyes, David Labour Party Ashton under Lyne 25.03.2013
Huppert, Julian Liberal Democrats Cambridge 12.02.2013
James, Sian C Labour Party Swansea East 25.02.2013
Kaufman, Gerald Labour Party Manchester Gorton 13.03.2013
Leech, John Liberal Democrats Manchester Withington 12.02.2013
Long, Naomi Alliance Party Belfast East 25.03.2013
McCrea, Dr William Democratic Unionist Party South Antrim 27.02.2013
McDonnell, Alasdair Social Democratic and Labour Party Belfast South 27.02.2013
McDonnell, John Labour Party Hayes and Harlington 22.03.2013
Miller, Andrew Labour Party Ellesmere Port and Neston 24.04.2013
Parish, Neil Conservative Party Tiverton and Honiton 05.03.2013
Ritchie, Margaret Social Democratic and Labour Party South Down 13.02.2013
Rogerson, Dan Liberal Democrats North Cornwall 25.02.2013
Russell, Bob Liberal Democrats Colchester 12.02.2013
Sanders, Adrian Liberal Democrats Torbay 01.03.2013
Shannon, Jim Democratic Unionist Party Strangford 13.02.2013
Sharma, Virendra Labour Party Ealing Southall 13.02.2013
Simpson, David Democratic Unionist Party Upper Bann 14.02.2013
Vaz, Keith Labour Party Leicester East 10.04.2013
Walley, Joan Labour Party Stoke-on-Trent North 25.03.2013
Ward, David Liberal Democrats Bradford East 25.02.2013
Watts, Dave Labour Party St Helens North 10.04.2013
Williams, Hywel Plaid Cymru Arfon 22.04.2013
Williams, Mark Liberal Democrats Ceredigion 25.02.2013
Williams, Stephen Liberal Democrats Bristol West 12.02.2013
Woodward, Shaun Labour Party St Helens South and Whiston 22.04.2013