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ACCESS TO DUCHENNE MUSCULAR DYSTROPHY TREATMENT, TRANSLARNA

EDM (Early Day Motion) 530: tabled on 19 October 2015

Tabled in the 2015-16 session.

This motion has been signed by 39 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That this House notes the draft guidance published by NICE to not approve the Duchenne muscular dystrophy treatment called Translarna at this stage; acknowledges that NICE has requested further data on cost and information from the latest phase of the clinical trial from PTC Therapeutics, the pharmaceutical company which manufactures the drug; recognises that a boy in Scotland affected by Duchenne muscular dystrophy will shortly receive Translarna after an individual funding request to the local NHS Board; expresses concern from Muscular Dystrophy UK and the Duchenne community that families whose children could benefit from the treatment have waited over a year since European Commission approval for Translarna; further recognises that boys can only take the drug if they are aged five and over and still walking; further notes that Translarna is available to patients in several European countries; and calls on NICE to urgently reach a positive decision at the next stage of the process.

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 21 October 2015
Blaydon
Betts, Mr Clive
Labour
Signed on 3 November 2015
Sheffield South East
Cooper, Rosie
Labour
Signed on 29 October 2015
West Lancashire
Cunningham, Mr Jim
Labour
Signed on 21 October 2015
Coventry South
Dodds, Mr Nigel
Democratic Unionist Party
Signed on 22 October 2015
Belfast North
Donaldson, Mr Jeffrey M.
Democratic Unionist Party
Signed on 22 October 2015
Lagan Valley
Dowd, Jim
Labour
Signed on 26 October 2015
Lewisham West and Penge
Flynn, Paul
Labour
Signed on 26 October 2015
Newport West
Godsiff, Mr Roger
Labour
Signed on 22 October 2015
Birmingham, Hall Green
Hepburn, Mr Stephen
Labour
Signed on 28 October 2015
Jarrow
Hermon, Lady
Independent
Signed on 20 October 2015
North Down
Hopkins, Kelvin
Labour
Signed on 21 October 2015
Luton North
Howarth, Mr George
Labour
Signed on 28 October 2015
Knowsley
Jones, Gerald
Labour
Signed on 21 October 2015
Merthyr Tydfil and Rhymney
Kinahan, Danny
Ulster Unionist Party
Signed on 21 October 2015
South Antrim
Law, Chris
Scottish National Party
Signed on 22 October 2015
Dundee West
Lewis, Dr Julian
Conservative
Signed on 20 October 2015
New Forest East
Mactaggart, Fiona
Labour
Signed on 29 October 2015
Slough
Matheson, Christian
Labour
Signed on 22 October 2015
City of Chester
McCabe, Steve
Labour
Signed on 1 December 2015
Birmingham, Selly Oak
McDonnell, Dr Alasdair
Social Democratic & Labour Party
Signed on 22 October 2015
Belfast South
McInnes, Liz
Labour
Signed on 26 October 2015
Heywood and Middleton
Meale, Sir Alan
Labour
Signed on 20 October 2015
Mansfield
Monaghan, Dr Paul
Scottish National Party
Signed on 29 October 2015
Caithness, Sutherland and Easter Ross
Mulholland, Greg
Liberal Democrat
Signed on 26 October 2015
Leeds North West
Osamor, Kate
Labour
Signed on 27 October 2015
Edmonton
Owen, Albert
Labour
Signed on 4 November 2015
Ynys Môn
Robinson, Gavin
Democratic Unionist Party
Signed on 20 October 2015
Belfast East
Robinson, Mr Geoffrey
Labour
Signed on 23 October 2015
Coventry North West
Shannon, Jim
Democratic Unionist Party
Signed on 20 October 2015
Strangford
Stringer, Graham
Labour
Signed on 21 October 2015
Blackley and Broughton
Twigg, Stephen
Labour
Signed on 4 November 2015
Liverpool, West Derby
Williams, Hywel
Plaid Cymru
Signed on 27 October 2015
Arfon

There are no withdrawn signatures for this motion.