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MND Patients in England and Wales Face Loss of Access to Life-Extending Drug Tofersen Due to Unchanged NHS Cost Threshold Since 2004

People with Motor Neurone Disease (MND) in England and Wales are worried about losing access to the life-extending drug Tofersen due to the NHS cost threshold not being raised since 2004.
Tofersen has shown to slow down the progression of the illness in trials, but the chances of it being recommended for use in England and Wales are slim due to Nice's cost-effectiveness threshold of up to £30,000 per year of good-quality life.

In 2004, the National Institute for Health and Care Excellence (Nice) set a price threshold of £30,000 for a new drug treatment.

However, studies suggest that the threshold should be around £50,000 if adjusted for inflation.

Tofersen, a genetic therapy for Motor Neuron Disease (MND) made by Biogen, is expensive due to its administration method and hospital stays.

It is estimated to help 100 people in England and Wales with alterations in the SOD1 gene, which is not considered clinically distinct from the most common form of MND by Nice.

As a result, Nice is basing its assessment on the lower price threshold, causing disappointment among MND patients who had hoped for a higher threshold for extremely rare conditions.

The NHS is required by law to provide medicines approved by Nice.

Mike Thomas, a 59-year-old man from Bridgend, has been living with Motor Neurone Disease (MND) for four years and has been taking Tofersen as part of a trial since last June.

The treatment has shown significant improvements in his condition, including increased walking capacity and energy levels.

Thomas expressed his concern about the potential end of the treatment, stating that it is an essential source of hope for him.
Translated by AI

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