MND drug shortage 'takes away hope of extra time'

A SHORTAGE of the only licensed medicine to treat motor neurone disease is stripping away "hope of any extra time with loved ones", a distraught patient has warned.

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The MND Association was due to meet health officials yesterday to discuss supply problems with prescriptions for riluzole, which began in the autumn.

The drug can help slow symptoms of the incurable brain and nerve condition including muscle weakness and slurred speech.

The MND charity said that despite raising the issue "repeatedly" with the Department of Health and Social Care, it had "so far been unable to provide clarity on the cause of the ongoing supply issues, nor to provide a solution".

Jennie Starkey, 51, was diagnosed with MND in September 2021 after suffering symptoms for 16 months.

She said riluzole "can give us anything from three months to nine months longer on predicted survival".

This is, on average, two to three years from the onset of symptoms. Jennie, from Bedfordshire, added that being unable to get hold of the medication was hugely stressful.