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Written Question
Chronic Fatigue Syndrome: Medical Treatments
Tuesday 26th March 2019

Asked by: Adrian Bailey (Labour (Co-op) - West Bromwich West)

Question to the Department of Health and Social Care:

What recent progress has been made on the treatment of myalgic encephalomyelitis.

Answered by Caroline Dinenage

In September 2017, the National Institute for Health and Care Excellence announced its plans for a full update to the existing clinical guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to ensure that treatment reflects the latest available evidence. The revised guideline will be published in 2020.

Since 2011, we have also invested £6 million into research into CFS/ME via the Medical Research Council and the National Institute for Health Research.


Written Question
Nusinersen
Thursday 28th February 2019

Asked by: Adrian Bailey (Labour (Co-op) - West Bromwich West)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what the planned timescale is for patients to access Spinraza treatment for muscular atrophy types 2 and 3.

Answered by Steve Brine

The National Institute for Health and Care Excellence (NICE) is currently developing guidance on the use of Spinraza (nusinersen) for the treatment of spinal muscular atrophy, including types 2 and 3.

NHS England and NICE have been in discussions with the manufacturer of Spinraza, Biogen, to explore whether there are commercial flexibilities that might enable NICE to recommend the drug as a clinically and cost effective use of NHS resources. Biogen has now submitted a revised submission for NICE’s independent Appraisal Committee to consider and a meeting has been arranged for 6 March 2019 to consider the recommendations. In the absence of final guidance from NICE, clinicians can apply to NHS England for funding in exceptional cases through the individual funding request process.


Written Question
Nusinersen
Thursday 28th February 2019

Asked by: Adrian Bailey (Labour (Co-op) - West Bromwich West)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what progress has been made on concluding a managed access treatment agreement for the use of Spinraza for patients with spinal muscular atrophy types 2 and 3.

Answered by Steve Brine

The National Institute for Health and Care Excellence (NICE) is currently developing guidance on the use of Spinraza (nusinersen) for the treatment of spinal muscular atrophy, including types 2 and 3.

NHS England and NICE have been in discussions with the manufacturer of Spinraza, Biogen, to explore whether there are commercial flexibilities that might enable NICE to recommend the drug as a clinically and cost effective use of NHS resources. Biogen has now submitted a revised submission for NICE’s independent Appraisal Committee to consider and a meeting has been arranged for 6 March 2019 to consider the recommendations. In the absence of final guidance from NICE, clinicians can apply to NHS England for funding in exceptional cases through the individual funding request process.