MND sufferers rue shortage of key drug
A shortage of the only licensed medicine that treats degenerative condition motor neurone disease (MND) has been reported with patients warning the issue is stripping away “hope of any extra time with loved ones”.
People with MND have been reporting issues with obtaining a prescription for riluzole since the autumn, according to the MND Association.
Thedrugcanhelpslowsymptoms 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 Departmentofhealthandsocialcare, but it has “so far been unable to provide clarity on the cause of the ongoing supply issues, nor to provide a solution”.
The MND Association was due to meet with government officials yesterday to discuss the situation.
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 said 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 obtain the medication has caused her anxiety.
She added: “That’s two fold one, worrying what the impact of not taking the drug will be. We know effect is minimal, but aspatientsit’stheonlyinterventionwehave.andtwo,theanxiety 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 me 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: “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.
“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 groupunited2endmndwhich campaigns for patient access, research and care.
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.
The Department of Health and Social Care were approached for comment.
We have a blind faith in medicine. Being told you can’t be fixed is mind blowing Jennie Starkey