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ATYPICAL HAEMOLYTIC URAEMIC SYNDROME

EDM (Early Day Motion) 1069: tabled on 12 February 2013

Tabled in the 2012-13 session.

This motion has been signed by 38 Members. It has not yet had any amendments submitted.

As this motion is using historical data, we may not have the record of the original ordering, in which case signatories are listed alphabetically.

Motion text

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.

The first 6 Members who have signed to support the motion are the sponsors. The primary sponsor is generally the person who tabled the motion and has responsibility for it. The date shown is when the Member signed the motion.

In addition to the sponsors, the following Members have signed to support the motion.

Begg, Dame Anne
Labour
Signed on 24 April 2013
Aberdeen South
Bottomley, Sir Peter
Conservative
Signed on 13 February 2013
Worthing West
Brooke, Annette
Liberal Democrat
Signed on 4 March 2013
Mid Dorset and North Poole
Caton, Martin
Labour
Signed on 13 February 2013
Gower
Dobbin, Jim
Labour
Signed on 26 February 2013
Heywood and Middleton
Flynn, Paul
Labour
Signed on 14 February 2013
Newport West
Hamilton, Fabian
Labour
Signed on 10 April 2013
Leeds North East
Hancock, Mr Mike
Liberal Democrat
Signed on 25 February 2013
Portsmouth South
Harvey, Sir Nick
Liberal Democrat
Signed on 28 February 2013
North Devon
Heyes, David
Labour
Signed on 25 March 2013
Ashton-under-Lyne
James, Mrs Siân C.
Labour
Signed on 25 February 2013
Swansea East
Kaufman, Sir Gerald
Labour
Signed on 13 March 2013
Manchester, Gorton
Long, Naomi
Alliance
Signed on 25 March 2013
Belfast East
McCrea, Dr William
Democratic Unionist Party
Signed on 27 February 2013
South Antrim
McDonnell, Dr Alasdair
Social Democratic & Labour Party
Signed on 27 February 2013
Belfast South
McDonnell, John
Labour
Signed on 22 March 2013
Hayes and Harlington
Miller, Andrew
Labour
Signed on 24 April 2013
Ellesmere Port and Neston
Parish, Neil
Conservative
Signed on 5 March 2013
Tiverton and Honiton
Ritchie, Ms Margaret
Social Democratic & Labour Party
Signed on 13 February 2013
South Down
Rogerson, Dan
Liberal Democrat
Signed on 25 February 2013
North Cornwall
Sanders, Mr Adrian
Liberal Democrat
Signed on 1 March 2013
Torbay
Shannon, Jim
Democratic Unionist Party
Signed on 13 February 2013
Strangford
Sharma, Mr Virendra
Labour
Signed on 13 February 2013
Ealing, Southall
Simpson, David
Democratic Unionist Party
Signed on 14 February 2013
Upper Bann
Vaz, Keith
Labour
Signed on 10 April 2013
Leicester East
Walley, Joan
Labour
Signed on 25 March 2013
Stoke-on-Trent North
Ward, Mr David
Liberal Democrat
Signed on 25 February 2013
Bradford East
Watts, Mr Dave
Labour
Signed on 10 April 2013
St Helens North
Williams, Hywel
Plaid Cymru
Signed on 22 April 2013
Arfon
Williams, Mr Mark
Liberal Democrat
Signed on 25 February 2013
Ceredigion
Woodward, Mr Shaun
Labour
Signed on 22 April 2013
St Helens South and Whiston

These members had previously signed the motion, but have now withdrawn their support. The date shown is when the Member withdrew their signature from the motion.