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ACCESS TO TREATMENTS FOR DUCHENNE MUSCULAR DYSTROPHY, TUBEROUS SCLEROSIS AND MORQUIO DISEASE

EDM (Early Day Motion) 819: tabled on 25 February 2015

Tabled in the 2014-15 session.

This motion has been signed by 63 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 is aware that the pause in NHS England's decision-making process on prioritisation and specialised commissioning has created a block to accessing effective medicines for rare diseases where there are commissioning policies under development or assessment; notes that for conditions such as Duchenne muscular dystrophy, tuberous sclerosis and Morquio disease, where a cohort of more than five patients exists, there is no alternative viable route to NHS funding; further notes that as a result patients with need of treatment are left at risk of significant harm, including organ failure and avoidable death; also notes that around 180 patients with Duchenne muscular dystrophy, tuberous sclerosis and Morquio disease are currently being denied access; believes it is unethical to place patients at risk as a result of process inefficiencies; and calls on the Government to bring into force, without delay, interim measures to provide children and adults with rare diseases access to vital and proven medicines that will prevent organ deterioration and premature death.

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.

Anderson, Mr David
Labour
Signed on 25 February 2015
Blaydon
Barron, Kevin
Labour
Signed on 3 March 2015
Rother Valley
Betts, Mr Clive
Labour
Signed on 11 March 2015
Sheffield South East
Blunkett, Mr David
Labour
Signed on 16 March 2015
Sheffield, Brightside and Hillsborough
Bottomley, Sir Peter
Conservative
Signed on 27 February 2015
Worthing West
Brooke, Annette
Liberal Democrat
Signed on 26 February 2015
Mid Dorset and North Poole
Campbell, Sir Menzies
Liberal Democrat
Signed on 10 March 2015
North East Fife
Carmichael, Neil
Conservative
Signed on 9 March 2015
Stroud
Caton, Martin
Labour
Signed on 4 March 2015
Gower
Champion, Sarah
Labour
Signed on 24 March 2015
Rotherham
Corbyn, Jeremy
Labour
Signed on 4 March 2015
Islington North
Crausby, Mr David
Labour
Signed on 4 March 2015
Bolton North East
Cunningham, Mr Jim
Labour
Signed on 17 March 2015
Coventry South
Davies, Geraint
Labour
Signed on 23 March 2015
Swansea West
Davies, Philip
Conservative
Signed on 27 February 2015
Shipley
Dodds, Mr Nigel
Democratic Unionist Party
Signed on 12 March 2015
Belfast North
Donaldson, Mr Jeffrey M.
Democratic Unionist Party
Signed on 9 March 2015
Lagan Valley
Edwards, Jonathan
Plaid Cymru
Signed on 10 March 2015
Carmarthen East and Dinefwr
Farrelly, Paul
Labour
Signed on 9 March 2015
Newcastle-under-Lyme
Galloway, Mr George
Respect
Signed on 6 March 2015
Bradford West
Glindon, Mrs Mary
Labour
Signed on 4 March 2015
North Tyneside
Godsiff, Mr Roger
Labour
Signed on 4 March 2015
Birmingham, Hall Green
Hermon, Lady
Independent
Signed on 4 March 2015
North Down
Hopkins, Kelvin
Labour
Signed on 26 February 2015
Luton North
Howarth, Mr George
Labour
Signed on 27 February 2015
Knowsley
Hunter, Mark
Liberal Democrat
Signed on 3 March 2015
Cheadle
Huppert, Dr Julian
Liberal Democrat
Signed on 9 March 2015
Cambridge
Jackson, Glenda
Labour
Signed on 26 February 2015
Hampstead and Kilburn
Kaufman, Sir Gerald
Labour
Signed on 17 March 2015
Manchester, Gorton
Knight, Sir Greg
Conservative
Signed on 4 March 2015
East Yorkshire
Leech, Mr John
Liberal Democrat
Signed on 26 February 2015
Manchester, Withington
Llwyd, Mr Elfyn
Plaid Cymru
Signed on 5 March 2015
Dwyfor Meirionnydd
Lucas, Caroline
Green Party
Signed on 3 March 2015
Brighton, Pavilion
Main, Mrs Anne
Conservative
Signed on 12 March 2015
St Albans
McCrea, Dr William
Democratic Unionist Party
Signed on 4 March 2015
South Antrim
McDonnell, John
Labour
Signed on 3 March 2015
Hayes and Harlington
McInnes, Liz
Labour
Signed on 4 March 2015
Heywood and Middleton
Meale, Sir Alan
Labour
Signed on 3 March 2015
Mansfield
Mearns, Ian
Labour
Signed on 2 March 2015
Gateshead
Morris, Grahame M.
Labour
Signed on 9 March 2015
Easington
Osborne, Sandra
Labour
Signed on 4 March 2015
Ayr, Carrick and Cumnock
Qureshi, Yasmin
Labour
Signed on 5 March 2015
Bolton South East
Ritchie, Ms Margaret
Social Democratic & Labour Party
Signed on 3 March 2015
South Down
Robertson, John
Labour
Signed on 9 March 2015
Glasgow North West
Rotheram, Steve
Labour
Signed on 27 February 2015
Liverpool, Walton
Ruddock, Dame Joan
Labour
Signed on 3 March 2015
Lewisham, Deptford
Sanders, Mr Adrian
Liberal Democrat
Signed on 4 March 2015
Torbay
Shannon, Jim
Democratic Unionist Party
Signed on 9 March 2015
Strangford
Sharma, Mr Virendra
Labour
Signed on 4 March 2015
Ealing, Southall
Sheerman, Mr Barry
Labour
Signed on 9 March 2015
Huddersfield
Simpson, David
Democratic Unionist Party
Signed on 9 March 2015
Upper Bann
Stringer, Graham
Labour
Signed on 3 March 2015
Blackley and Broughton
Ward, Mr David
Liberal Democrat
Signed on 4 March 2015
Bradford East
Whittingdale, Mr John
Conservative
Signed on 24 March 2015
Maldon
Williamson, Chris
Labour
Signed on 18 March 2015
Derby North
Wood, Mike
Labour
Signed on 16 March 2015
Batley and Spen
Wright, David
Labour
Signed on 2 March 2015
Telford

There are no withdrawn signatures for this motion.