11 December 2023 News
The MND Association has written to the Secretary of State for Health and Social Care Victoria Atkins urging her to act fast to resolve the reported shortage of riluzole – the only licensed drug available to people living with motor neurone disease.
Chief Executive Tanya Curry penned the letter as the Association continues to receive daily reports of people with MND struggling to have their prescriptions for the drug fulfilled.
In her letter Tanya said:
Since September this year, we have been receiving reports from pharmacies and patients with MND who have been unable to access riluzole due to a lack of available stock…. 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.
In response to a Parliamentary Question submitted in November, the Minister of State for Health replied: “We are aware that one of the suppliers of riluzole 50 milligram tablets is experiencing a supply issue. However, alternative suppliers have stock available. We are working closely with all the relevant manufacturers to expedite deliveries, where possible, to ensure supplies remain available for patients in the United Kingdom.”
However, this assurance is the opposite to what we are hearing…. Valuable clinical time is being spent trying to source supplies and responding to queries from concerned patients. Some newly diagnosed patients are being denied their only medication option due to the lack of available supply. This is absolutely not good enough.
...This situation is causing enormous stress and anxiety to the MND community… 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.
In her letter, Tanya called for the Department to clarify in detail:
- what steps it has taken to understand the causes of the supply issue and to ensure the restoration of supply immediately
- why there continues to be no stock available to order, despite the assurances evidently given to the Department by suppliers
- when supply will be fully restored.
She also asked, on behalf of the whole MND community, that ‘the Department of Health and Social Care takes urgent steps to ensure that in cases where generic riluzole is not available, patients are given access to a branded alternative version of the drug’.
Shortages in Scotland have been addressed by a national directive issued to allow dispensing of proprietary versions of the drug with no financial barrier. The letter calls for the same to happen in the UK.
The letter concludes:
Almost all people living with MND are prescribed riluzole to extend their life, delay the progression of symptoms, and give them more time with their families and loved ones. I hope you will agree with me that this issue needs to be resolved with the utmost urgency.