Mentions:
1: Greg Mulholland (LDEM - Leeds North West) letters to him about the NHS England failure to come up with a process to allow the NHS to fund the drugs - Speech Link
2: David Cameron (CON - Witney) Gentleman and the young boy with Duchenne muscular dystrophy syndrome. I have looked into this. - Speech Link
Mentions:
1: Greg Mulholland (LDEM - Leeds North West) That is very much the case with Morquio, too. - Speech Link
2: Greg Mulholland (LDEM - Leeds North West) Without such drugs, boys with Duchenne and children with Morquio are deteriorating now while waiting. - Speech Link
3: George Freeman (CON - Mid Norfolk) Both conditions are very rare—there are about 80 children living with Morquio syndrome in England, and - Speech Link
Asked by: Stella Creasy (Labour (Co-op) - Walthamstow)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, when the NHS will make a decision on the funding for Translarna; if he will make funding available to ensure that the people who may benefit from Translarna have long-term access to that drug; what steps he is taking to ensure that emerging treatments for Duchenne muscular dystrophy are fully funded by the NHS; and if he will make a statement.
Answered by George Freeman
We understand that a draft clinical commissioning policy to cover the use of ataluren (Translarna) for the treatment of Duchenne muscular dystrophy is currently going through NHS England's standard development and decision making processes.
NHS England has advised that a meeting of its Clinical Priorities Advisory Group has been delayed whilst further work is undertaken to refine the overall decision making process. NHS England remains committed however, to ensuring that a timely decision is made about a range of investment proposals that have been put forward for the 2015-16 financial year.
NHS England continues to keep the range of services and treatments available to patients under review as new evidence and expert guidance becomes available.
On 9 December 2014, I met with the hon. Member for Leeds North West (Greg Mulholland), representatives from the Society for Mucopolysaccharide Diseases and Muscular Dystrophy Campaign, as well as the parents of three children who suffer with Morquio syndrome and Duchenne muscular dystrophy, to hear their concerns about the continued provision of innovative drugs for these conditions which have been greatly benefiting their children.