Parliament Website

Eu Orphan Drug Legislation And Its Effects On People With Rare Neuromuscular Conditions

EDM number 1115 in 2010-12, proposed by Julian Huppert on 01/12/2010.
Categorised under the topic of Health services.

That this House welcomes the letter published in the British Medical Journal by leading doctors from the Oxford Muscle and Nerve Centre and across the country, supported by the Muscular Dystrophy Campaign and Myasthenia Gravis Association, working with patients with two rare neuromuscular conditions,congenital myasthenic syndrome and Lambert-Eaton myasthenic syndrome,regarding the high cost of the one available treatment for these conditions; notes that, prior to its licensing, the drug was cheaply available to clinicians for 20 years; is concerned that the cost has now risen by 70 to 100 fold since the licence was granted, taking the cost per patient from between 800 and 1,250 per year to between 40,000 and 70,000 per year; further notes that, while the drug company is legally entitled to act in this way under the current EU orphan drugs legislation, the legislation was originally intended to encourage drug companies to conduct research into rare diseases and develop original treatments; shares the concern of clinicians that some patients are now being denied this treatment due to its high cost; and calls on the Government to review the regulations to ensure access to treatments for patients with these rare neuromuscular conditions, and best value for the taxpayer.

This motion has been signed by a total of 51 MPs.

Julian Huppert01/12/2010CambridgeLiberal DemocratProposed
Hywel Francis01/12/2010AberavonLabourSeconded
Peter Bottomley01/12/2010Worthing WestConservativeSeconded
Andrew George01/12/2010St IvesLiberal DemocratSeconded
John Leech02/12/2010Manchester, WithingtonLiberal DemocratSeconded
Jim Dobbin02/12/2010Heywood and MiddletonLabourSeconded
Mark Williams03/12/2010CeredigionLiberal DemocratSigned
Valerie Vaz03/12/2010Walsall SouthLabourSigned
Paul Flynn06/12/2010Newport WestLabourSigned
Marsha Singh07/12/2010Bradford WestLabourSigned
Martin Caton07/12/2010GowerLabourSigned
Jeremy Corbyn07/12/2010Islington NorthLabourSigned
Mark Durkan07/12/2010FoyleSocial Democratic and Labour PartySigned
Stephen Hepburn08/12/2010JarrowLabourSigned
Ronnie Campbell08/12/2010Blyth ValleyLabourSigned
Gregory Campbell08/12/2010East LondonderryDUPSigned
David Simpson08/12/2010Upper BannDUPSigned
Margaret Ritchie09/12/2010South DownSocial Democratic and Labour PartySigned
Elfyn Llwyd09/12/2010Dwyfor MeirionnyddPlaid CymruSigned
Naomi Long09/12/2010Belfast EastAllianceSigned
John McDonnell09/12/2010Hayes and HarlingtonLabourSigned
Michael Connarty09/12/2010Linlithgow and East FalkirkLabourSigned
Nigel Dodds09/12/2010Belfast NorthDUPSigned
Grahame Morris13/12/2010EasingtonLabourSigned
Graham Stringer15/12/2010Blackley and BroughtonLabourSigned
Cathy Jamieson16/12/2010Kilmarnock and LoudounLabourSigned
Anne Begg27/01/2011Aberdeen SouthLabourSigned
Frank Dobson27/01/2011Holborn and St PancrasLabourSigned
Mark Field31/01/2011Cities of London and WestminsterConservativeSigned
Simon Wright31/01/2011Norwich SouthLiberal DemocratSigned
Alan Reid01/02/2011Argyll and ButeLiberal DemocratSigned
Tony Cunningham02/02/2011WorkingtonLabourSigned
Mike Hancock02/02/2011Portsmouth SouthLiberal DemocratSigned
Dan Rogerson03/02/2011North CornwallLiberal DemocratSigned
Stephen McCabe07/02/2011Birmingham, Selly OakLabourSigned
Gary Streeter07/02/2011South West DevonConservativeSigned
Kevin Barron09/02/2011Rother ValleyLabourSigned
Don Foster10/02/2011BathLiberal DemocratSigned
Yvonne Fovargue11/02/2011MakerfieldLabourSigned
Stephen Lloyd14/02/2011EastbourneLiberal DemocratSigned
Stephen Gilbert15/02/2011St Austell and NewquayLiberal DemocratSigned
John Whittingdale28/02/2011MaldonConservativeSigned
Caroline Lucas02/03/2011Brighton, PavilionGreenSigned
Jo Swinson02/03/2011East DunbartonshireLiberal DemocratSigned
Chris Ruane08/03/2011Vale of ClwydLabourSigned
Martin Horwood09/03/2011CheltenhamLiberal DemocratSigned
John Mann10/03/2011BassetlawLabourSigned
Paul Farrelly10/03/2011Newcastle-under-LymeLabourSigned
George Howarth14/03/2011KnowsleyLabourSigned
Hugh Bayley17/03/2011York CentralLabourSigned
David Morris04/05/2011Morecambe and LunesdaleConservativeSigned

Download raw data as csv or xml.