Early day motion 819

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

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Total number of signatures: 63

Anderson, David Barron, Kevin Betts, Clive Blunkett, David
Bottomley, Peter Brooke, Annette Campbell, Menzies Campbell, Ronnie
Carmichael, Neil Caton, Martin Champion, Sarah Corbyn, Jeremy
Crausby, David Cunningham, Jim Davies, Geraint Davies, Philip
Dodds, Nigel Donaldson, Jeffrey Durkan, Mark Edwards, Jonathan
Farrelly, Paul Galloway, George George, Andrew Glindon, Mary
Godsiff, Roger Hancock, Mike Hermon, Lady Hopkins, Kelvin
Howarth, George Hunter, Mark Huppert, Julian Jackson, Glenda
Kaufman, Gerald Knight, Greg Leech, John Llwyd, Elfyn
Lucas, Caroline Main, Anne McCrea, Dr William McDonnell, John
McInnes, Liz Meale, Alan Mearns, Ian Morris, Grahame M
Mulholland, Greg Osborne, Sandra Qureshi, Yasmin Ritchie, Margaret
Robertson, John Rotheram, Steve Ruddock, Joan Sanders, Adrian
Shannon, Jim Sharma, Virendra Sheerman, Barry Simpson, David
Stringer, Graham Tami, Mark Ward, David Whittingdale, John
Williamson, Chris Wood, Mike Roy Wright, David

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.