Health Minister accused of failing to address shortages of medicines for motor neuron diseases

Health Minister Victoria Atkins has been accused of failing to secure supplies of the only drug that can extend the lives of motor neuron disease patients by months, despite officials being alerted to a shortage last fall.

Shortages of riluzole, which can delay the onset of ventilator dependency, were first reported by patients to the Motor Neurone Disease Association in August and the situation was reported to the Department of Health and Social Care in September.

Despite claims from the DHSC in a December phone call that pharmaceutical company Glenmark had agreed to rush more of the drug to the UK market, people with the terminal illness are still reporting shortages of riluzole 50mg tablets in England, Wales and North Africa. Ireland, according to the MND Association.

Atkins, who was appointed to her role in November as the government made its latest reshuffle following the resignation of then Home Secretary Suella Braverman, is also said to have failed to respond to a letter sent by the CEO of the MND Association in December sent. , Tanya Curry.

DHSC officials are also said to have failed to respond to two subsequent emails requesting more information, amid growing panic among people with motor neurone disease, which gradually damages parts of the nervous system, leading to muscle weakness, often with visible loss , and death. MND affects up to 5,000 adults in Britain at any one time. Life expectancy after diagnosis is one to five years.

The MND Association says newly diagnosed patients looking to extend their lives by a few extra months are being denied their only medication option due to the lack of available supply. It said: “People with ALS certainly should not have to spend their precious days fighting to get the medicine they deserve.”

During the last three months of 2023, there was also a shortage of 1.5 mg hyoscine hydrobromide patches, which are used by people with ALS to control drooling.

Alex Massey, head of campaigns, policy and public affairs at the MND Association, said there is a disconnect between the government’s claims that the issue is being addressed and the experience of people seeking riluzole.

He said: “Since last fall, people with ALS have reported being unable to fill their prescriptions for riluzole, the only drug available to treat the condition.

“We have repeatedly raised this issue 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 or provide a solution. The department must act urgently to ensure that everyone with MND has access to the medicines they need and are entitled to.”

Massey added that the situation had not improved since officials claimed new supplies were coming onto the market.

He said: “We are still getting people contacting us saying they cannot fill their prescriptions. Pharmacists are still seeing out-of-stock supplies and are unable to order supplies when they try to order.

“We have been in contact with Community Pharmacy England; I spoke to them again last week. They said they continue to see the problems this month and continue to hear reports from pharmacists about shortages. So it’s actually a confusing situation: on the one hand we’re being told by the Ministry of Health that more supplies have been released, but we’re not seeing any improvements on the ground in terms of people’s experiences.

“Since we went back to the Department of Health to ask about this discrepancy about what is going on, we have not received anything at all from them since Christmas, despite returning to them at least a few times this month.”

Martin Imms, Senior Director and Country Manager of pharmaceutical company Glenmark said: “A number of manufacturers have withdrawn from the UK market – leading to a stock shortage in the UK. This issue was reported to us by the DHSC and we worked hard with various internal teams, including our integrated delivery function, to meet this product demand.

“As a global organization with a commercial presence in 80 countries, we must balance multiple competing interests. Combined with our finite delivery capabilities, it took us some time to resolve this.

“We are pleased that we have managed to secure more (active pharmaceutical ingredients) and increase production capacity and subsequently accelerated the final product from our manufacturing site in India to the UK.

“We should now be in a position to support 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.”

Earlier this week, The Guardian revealed that figures from the British Generic Manufacturers Association showed the number of medicines reporting shortages had doubled in the past two years. The DHSC said it did not recognize the figures.

A spokesperson for the DHSC said it had scheduled a phone call with the MND Association for next Wednesday.

He said: “We understand how frustrating and distressing drug shortages can be and are aware of an issue with one supplier of riluzole.

“Alternative suppliers have confirmed that they have stock and can meet demand. We continue to work with manufacturers to ensure patients with motor neurone disease continue to have access to the medicines they need.

“We are committed to improving the lives of people with MND. That’s why in November 2021 we committed to spending at least £50 million on MND research over five years to support ground-breaking research and enable faster progress towards treatments.”