Early day motion 35

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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 Governemnt has not followed AGNSS' recommendation and has instead referred Eculizumab to the National Institute for Health and Care 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: 25

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Showing 25 out of 25

Name Party Constituency Date Signed
Caton, Martin Labour Party Gower 15.05.2013
Corbyn, Jeremy Labour Party Islington North 10.05.2013
Crausby, David Labour Party Bolton North East 21.05.2013
Dobbin, Jim Labour Party Heywood and Middleton 13.05.2013
Dodds, Nigel Democratic Unionist Party Belfast North 16.10.2013
Durkan, Mark Social Democratic and Labour Party Foyle 13.05.2013
Galloway, George Respect Bradford West 26.06.2013
George, Andrew Liberal Democrats St Ives 15.05.2013
Glindon, Mary Labour Party North Tyneside 14.05.2013
Hancock, Mike Liberal Democrats Portsmouth South 20.05.2013
Harvey, Nick Liberal Democrats North Devon 06.06.2013
Hermon, Lady INDEPENDENT North Down 15.05.2013
Leech, John Liberal Democrats Manchester Withington 08.05.2013
Llwyd, Elfyn Plaid Cymru Dwyfor Meirionnydd 15.05.2013
Long, Naomi Alliance Party Belfast East 03.07.2013
McCrea, Dr William Democratic Unionist Party South Antrim 09.05.2013
McDonnell, Alasdair Social Democratic and Labour Party Belfast South 11.09.2013
McDonnell, John Labour Party Hayes and Harlington 09.05.2013
Ritchie, Margaret Social Democratic and Labour Party South Down 08.05.2013
Roy, Lindsay Labour Party Glenrothes 11.09.2013
Russell, Bob Liberal Democrats Colchester 15.05.2013
Shannon, Jim Democratic Unionist Party Strangford 13.05.2013
Simpson, David Democratic Unionist Party Upper Bann 14.05.2013
Williams, Mark Liberal Democrats Ceredigion 17.06.2013
Wilson, Sammy Democratic Unionist Party East Antrim 02.09.2013