Parliament Website

Atypical Haemolytic Uraemic Syndrome

EDM number 1069 in 2012-13, proposed by John Leech on 12/02/2013.
Categorised under the topics of Diseases and Health services.

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.

This motion has been signed by a total of 38 MPs, 1 of these signatures have been withdrawn.

MPDateConstituencyPartyType
John Leech12/02/2013Manchester, WithingtonLiberal DemocratProposed
Bob Russell12/02/2013ColchesterLiberal DemocratSeconded
Julian Huppert12/02/2013CambridgeLiberal DemocratSeconded
Stephen Williams12/02/2013Bristol WestLiberal DemocratSeconded
Andrew George12/02/2013St IvesLiberal DemocratSeconded
Mark Durkan12/02/2013FoyleSocial Democratic and Labour PartySeconded
Margaret Ritchie13/02/2013South DownSocial Democratic and Labour PartySigned
Jim Shannon13/02/2013StrangfordDUPSigned
Martin Caton13/02/2013GowerLabourSigned
Peter Bottomley13/02/2013Worthing WestConservativeSigned
Virendra Sharma13/02/2013Ealing, SouthallLabourSigned
David Simpson14/02/2013Upper BannDUPSigned
Paul Flynn14/02/2013Newport WestLabourSigned
Mike Hancock25/02/2013Portsmouth SouthLiberal DemocratSigned
Si25/02/2013Swansea EastLabourSigned
Dan Rogerson25/02/2013North CornwallLiberal DemocratSigned
Mark Williams25/02/2013CeredigionLiberal DemocratSigned
David Ward25/02/2013Bradford EastLiberal DemocratSigned
Jim Dobbin26/02/2013Heywood and MiddletonLabourSigned
William McCrea27/02/2013South AntrimDUPSigned
Alasdair McDonnell27/02/2013Belfast SouthSocial Democratic and Labour PartySigned
Nick Harvey28/02/2013North DevonLiberal DemocratSigned
Adrian Sanders01/03/2013TorbayLiberal DemocratSigned
Annette Brooke04/03/2013Mid Dorset and North PooleLiberal DemocratSigned
Neil Parish05/03/2013Tiverton and HonitonConservativeSigned
Gerald Kaufman13/03/2013Manchester, GortonLabourSigned
John McDonnell22/03/2013Hayes and HarlingtonLabourSigned
Joan Walley25/03/2013Stoke-on-Trent NorthLabourSigned
Naomi Long25/03/2013Belfast EastAllianceSigned
David Heyes25/03/2013Ashton-under-LyneLabourSigned
Fabian Hamilton10/04/2013Leeds North EastLabourSigned
Keith Vaz10/04/2013Leicester EastLabourSigned
Dave Watts10/04/2013St Helens NorthLabourSigned
Stephen Lloyd22/04/2013EastbourneLiberal DemocratWithdrawn
Hywel Williams22/04/2013ArfonPlaid CymruSigned
Shaun Woodward22/04/2013St Helens South and WhistonLabourSigned
Andrew Miller24/04/2013Ellesmere Port and NestonLabourSigned
Anne Begg24/04/2013Aberdeen SouthLabourSigned

Download raw data as csv or xml.