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Shortage of MND drug causing patients anxiety as charity seeks resolution

Patients have been reporting issues with getting their prescription for riluzole since autumn, according to the MND Association (Julien Behal/PA)
Patients have been reporting issues with getting their prescription for riluzole since autumn, according to the MND Association (Julien Behal/PA)

Charity leaders are set to meet with the Government to discuss a shortage in the supply of the only licenced medicine that treats degenerative condition motor neurone disease (MND), with patients warning the issue is stripping away “hope of any extra time with loved ones”.

People with MND have been reporting issues with getting a prescription for riluzole since the autumn, according to the MND Association.

The drug can help slow symptoms of the incurable condition that impacts the brain and nerves, which include muscle weakness and slurred speech.

The charity said it has raised the issue of the shortage “repeatedly” with the Department of Health and Social Care, but it has “so far been unable to provide clarity on the cause of the ongoing supply issues, nor to provide a solution”.

It is understood the MND Association was contacted by the Government over the weekend and will be meeting with officials on Tuesday to discuss the situation.

One patient impacted by the shortage shared her experience with the PA news agency.

Jennie Starkey, 51, from Bedfordshire, was diagnosed with MND in September 2021, although she believes she had symptoms for about 16 months prior to this.

She told PA that riluzole “can give us anything from three months to nine months longer on predicted survival” on average, two to three years from the onset of symptoms.

She said the impact of not being able to get hold of the medication has caused her anxiety.

Scottish prescription charges set to fall
People with MND have been reporting issues with getting a prescription for riluzole since the autumn (Andrew Milligan/PA)

She added: “That’s two fold – one, worrying what the impact of not taking the drug will be. We know effect is minimal, but as patients 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 and get them to authorise a prescription for the more expensive, named version of the drug Rilutek, as opposed to the generic version riluzole.

“This was difficult as GPs are protective of their budgets it seems.

“It also made you question how much worth society sees in you; Government’s slow response, GPs pushing back, even the MND Association being pretty slow on the uptake before they started to speak out.”

A spokesperson for the MND Association said they will use the conversation with Government to “highlight the issues the shortages are having on our MND community and to ask for assurance as to what their plan is to resolve the situation”.

They added: “Despite reports of additional supply being released into the market we continue to receive reports of people being unable to access the drug, and so we hope to clarify the situation and resolve any issues affecting access.”

Ms Starkey said being diagnosed with MND put her in a “zombie state”.

She told PA: “You don’t expect to be diagnosed with a disease that has no significantly effective treatments. We have a blind faith in medicine. 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.”

She is now part of advocacy group United2EndMND which campaigns for patient access, research and care.

Ms Starkey told PA she is 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.

However, she added “the only drug we have on prescription is riluzole” until then.

“Even if results for trial are favourable it will take a considerable period of time for drug to be repurposed,” she said.

“Therefore riluzole is all we have to give us hope of any extra time with loved ones.”

A Department of Health and Social Care spokesperson said: “We understand how frustrating and distressing medicine supply issues can be and once alerted to disruptions, we ensured there was an alternative supplier that could make sufficient riluzole stock available to fully meet demand.

“While we can’t always prevent supply issues from occurring, we have a range of well-established processes and tools to manage them when they arise and help mitigate risks to patients.”