Early day motion tabled by primary sponsor Greg Mulholland (Liberal Democrat), on Wednesday, 25 February 2015, in the House of Commons. It is signed by 63 members in total.

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

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.

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Secondary information

Type

Early day motion

Reference

819 

Session

2014-15

Other sponsors

Ronnie Campbell

Mark Durkan

Andrew George

Mike Hancock

Mark Tami

Subjects

Health services Diseases

Link

View this Early day motion on www.parliament.uk