The health secretary, Victoria Atkins, has been accused of failing to ensure the supply of the only drug that can lengthen the lives of motor neurone disease sufferers by months despite officials being alerted to a shortage last autumn.
Shortages of riluzole, which can delay the onset of ventilator dependence, were first reported to the Motor Neurone Disease Association by sufferers in August and the situation was flagged to the Department of Health and Social Care in September.
Despite claims from the DHSC during a phone call in December that the pharmaceutical company Glenmark had agreed to rush more of the drug on to the UK market, people with the terminal disease are still reporting a lack of riluzole 50mg tablets in England, Wales and Northern Ireland, according to the MND Association.
Atkins, who was appointed to her role in November when the government passed through its latest reshuffle after the sacking of the then home secretary, Suella Braverman, is said to have failed to respond to a letter sent in December by the MND Association’s chief executive, Tanya Curry.
DHSC officials are also said to have not responded to two later emails seeking further information amid growing panic among those with motor neurone disease, which progressively damages parts of the nervous system, leading to muscle weakness, often with visible wasting, and death. MND affects up to 5,000 adults in the UK at any one time. Life expectancy after diagnosis is one to five years.
The MND Association says newly diagnosed patients seeking to extend their lives for a few additional months are being denied their only medication option due to the lack of available supply. It said: “People with MND certainly should not have to spend their precious days fighting to get the medication they deserve.”
For the last three months of 2023, there were also shortages of hyoscine hydrobromide 1.5mg patches, which are used by people with MND to control drooling.
Alex Massey, the head of campaigning, policy and public affairs at the MND Association, said there was a discrepancy between the government’s claims that the issue was being dealt with and the experience of people looking for riluzole.
He said: “Since last autumn, people living with MND have reported being unable to fill their prescriptions for riluzole, the only drug available to treat the condition.
“We have raised this issue repeatedly with the Department of Health and Social Care, but they have so far been unable to provide clarity on the cause of the ongoing supply issues, nor to provide a solution. The department must act urgently to ensure that everyone living with MND can access the medication they need and are entitled to.”
Massey added that there had been no alleviation of the situation since officials had claimed new supplies were entering the market.
He said: “We continue to have people getting in touch saying they can’t fill their prescriptions. Pharmacists are continuing to see [supplies] out of stock and being unable to order supplies when they try to order.
“We’ve been in touch with Community Pharmacy England; I spoke to them again only last week. They said they’re continuing to see the problems this month, continuing to hear reports from pharmacists of shortages. So it’s a confusing situation really: we’re told on the one hand by the Department of Health that more supplies have been released, but we’re not seeing improvements on the ground in terms of people’s experiences.
“Since going back to the Department of Health to ask about this discrepancy as to what’s going on, we’ve had nothing back from them at all since Christmas, despite going back to them a couple of times at least this month.”
Martin Imms, senior director and country manager for the pharmaceutical company Glenmark, said: “A number of manufacturers have withdrawn from the UK market – that has led to a shortage of stock in the UK. This issue was flagged to us by the DHSC, following which we have worked hard with various teams internally including our integrated supply function to meet this product demand.
“As a global organisation with a commercial presence across 80 countries, we have to balance multiple competing interests and coupled with our finite supply capabilities, this took us some time to resolve.
“We are pleased to have managed to secure more [active pharmaceutical ingredients] and increase production capacity and have subsequently fast-tracked finished product from our manufacturing site in India to the UK.
“We should now be in a position to support the full market volume demand for the foreseeable future and will continue to work closely with the DHSC to monitor the situation and mitigate the impact of any subsequent issues arising.”
Earlier this week the Guardian revealed that figures collated by the British Generic Manufacturers Association showed that the number of medicines where shortages were being reported had doubled over the last two years. The DHSC said it did not recognise the figures.
A spokesperson for the DHSC said it had scheduled a call with the MND Association for next Wednesday.
He said: “We understand how frustrating and distressing medication shortages can be and are aware of an issue with one supplier of riluzole.
“Alternative suppliers have confirmed they have stock available and can meet demand and we continue to work with manufacturers to help ensure patients with motor neurone disease can continue to access the medicines they need.
“We are determined to improve the lives of people with MND. That’s why, in November 2021, we committed to spend at least £50m on MND research over five years to support cutting-edge research and enable faster progress towards treatments.”
