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The Guardian - UK
The Guardian - UK
Politics
Daniel Boffey Chief reporter

People with MND in England and Wales fear losing access to life-extending drug

NHS NICE England Wales Biogen Disease
A woman uses a pipette in a laboratory
Tofersen is made by Biogen, which has said it will continue to provide the drug until Nice makes a decision about providing it to patients who have a subtype of MND. Photograph: David A White/Biogen/EPA

People with motor neurone disease have spoken of their devastation over the likely loss of access to a life-extending drug due to an NHS cost threshold that has not been raised since 2004.

Tofersen has slowed the progress of the illness in trials, but the chances of the drug being recommended for use in England and Wales are said to be slim.

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