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.
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.
She said: “That’s two-fold – one, worrying what the impact of not taking the drug will be. It’s the only intervention we have.
“And two, the anxiety of having to drive from one pharmacy to another trying to source the drug, speaking with a GP to try to get them to authorise a prescription for the more expensive, named version Rilutek, as opposed to the generic riluzole.
“This was difficult as GPs are protective of their budgets it seems.”
Jennie added that the slow response to the shortage from Government, GPs and charities had raised concerns about the way people with MND are viewed by society.
The MND Association said that in the meeting it would “highlight the issues the shortages are having on our community and to ask for assurance as to what their plan is to resolve the situation”. It added: “Despite reports of additional supply being released into the market we continue to receive reports of people being unable to access the drug.
“We hope to clarify the situation and resolve any issues affecting access.”
Jennie said her diagnosis put her in a “zombie state”, adding: “You don’t expect to be diagnosed with a disease that has no significantly effective treatments. Being told you can’t be fixed is mind blowing.
“MND is like a massive rock that’s been thrown in the pond and the ripples touch everything. You, family, friends, occupation, social life – the works.”
Jennie is part of advocacy group United2EndMND, which campaigns for patient access, research and care. Our sister newspaper the Sunday Express is campaigning for greater investment into efforts to find a cure for MND. A research centre network opened last year after ministers announced a £50million boost for the condition.
Jennie said she was awaiting the publication of “promising” results from the MIROCAL trial – which is exploring the use of a molecule used in cancer drugs to halt the progression of MND.
But she added: “Even if results are favourable it will take considerable time for the drug to be repurposed. Therefore riluzole is all we have to give us hope of any extra time with loved ones.”
The Department of Health and Social Care was approached for comment.
