Patients have been forced to visit multiple chemists to find riluzole, which slows the progression of the brutal terminal condition by a few months, due to a supply issue that has created a UK-wide stock shortage since September.
One MND sufferer, who did not want to be named, recently had to go to 15 pharmacies before they could get the drug.
Tanya Curry, chief executive of the MND Association, has written to the minister saying: “We are now receiving reports daily from across the country that patients are unable to access their prescribed medicine, with no stock available in pharmacies and no indication of when it will become available.
“Some newly diagnosed patients are being denied their only medication option due to the lack of available supply. This is absolutely not good enough.”
She added: “The lives of people with MND are already limited by this devastating condition. They do not have time to wait, and certainly should not have to spend their precious days fighting to get the medication they deserve.”
Patient Lee Millard said: “We have but one drug, riluzole, for MND currently and anything that risks patients not receiving this one single tablet adds to the distress of day to day life.
“Our main charity, the MNDA, have raised with the Department of Health and Social Care (DHSC) but have received no details of what the issue is nor how it will be resolved. This just adds to the concern.”
A DHSC spokesperson said: “We understand how distressing medication shortages can be, which is why we’ve been working closely with manufacturers to resolve these issues as soon as possible and ensure patients have continuous access to MND medication in the UK.
“We are aware of an issue with one supplier but alternative suppliers should have stock available for patients who require it.
“We are determined to improve the lives of people with MND. That’s why, in November 2021, we committed to spend at least £50million on MND research over five years ending in March 2027.
“It is hoped this will enable faster progress towards treatments for this debilitating condition.”
