The health secretary has been accused of neglecting to address the issue of limited availability of a medication for motor neurone disease.

Estimated read time 5 min read

Victoria Atkins, the health secretary, has been criticized for not ensuring that the only drug capable of extending the lives of those with motor neurone disease for several months is readily available. This comes despite officials being made aware of a shortage since last fall.

The Motor Neurone Disease Association received reports from patients in August about a scarcity of riluzole, a drug that can delay the need for ventilator support. The issue was then brought to the attention of the Department of Health and Social Care in September.

Although the Department of Health and Social Care (DHSC) stated in a December phone conversation that Glenmark, a pharmaceutical company, had agreed to expedite the distribution of more riluzole 50mg tablets to the UK, individuals with terminal disease are still experiencing shortages in England, Wales, and Northern Ireland, as reported by the MND Association.

According to reports, Atkins, who assumed her position in November during the government’s recent reshuffle following the dismissal of former home secretary Suella Braverman, allegedly did not reply to a letter from Tanya Curry, the chief executive of the MND Association, sent in December.

According to sources, DHSC officials failed to reply to two subsequent emails requesting more details, causing increasing alarm among individuals with motor neurone disease. This condition gradually harms parts of the nervous system, resulting in muscle weakness, often accompanied by visible degeneration, and ultimately death. MND impacts around 5,000 adults in the UK at any given moment. The average lifespan after diagnosis ranges from one to five years.

The MND Association states that individuals who have recently been diagnosed with the condition are being unable to access their sole medication option, resulting in the denial of a few extra months of life. The organization expressed that those with MND should not have to use their limited time fighting for the necessary medication.

During the final three months of 2023, there was a lack of availability for hyoscine hydrobromide 1.5mg patches, which are commonly used by individuals with Motor Neurone Disease (MND) to manage excessive drooling.

Alex Massey, the MND Association’s leader in campaigning, policy, and public affairs, expressed that there was a difference between the government’s assertion that they were addressing the issue and the reality faced by those seeking riluzole.

According to him, individuals affected by MND have recently faced difficulty obtaining riluzole, the sole medication used to manage the disease, since last fall.

We have brought up this problem multiple times to the Department of Health and Social Care, but they have not been able to give us a clear explanation for the ongoing supply problems or a resolution. It is imperative that the department takes urgent action to ensure that all individuals with MND have access to the necessary medication they are entitled to.

According to Massey, the situation had not improved despite officials’ claims that new supplies were being introduced to the market.

He mentioned that they are still receiving messages from individuals struggling to fill their prescriptions. Pharmacists are still facing shortages and are not able to order necessary supplies.

I recently communicated with Community Pharmacy England and spoke to them again last week. They have informed me that they are still experiencing shortages this month and receiving reports from pharmacists about the issue. This creates a confusing situation as the Department of Health claims that more supplies have been released, yet people’s experiences do not reflect this on the ground.

“After following up with the Department of Health regarding this inconsistency, we have not received any response from them since Christmas, despite reaching out to them multiple times this month.”

Martin Imms, the senior director and country manager of Glenmark, a pharmaceutical company, stated that there is a shortage of stock in the UK due to some manufacturers withdrawing from the market. The DHSC brought this issue to our attention and we have been working diligently with our internal teams, including our integrated supply function, to fulfill the demand for this product.

As a worldwide company with operations in 80 nations, we must consider various conflicting interests while also managing our limited resources. It took us a while to find a solution.

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“We are happy to announce that we have successfully obtained additional active pharmaceutical ingredients and expanded our production capabilities. As a result, we have expedited the delivery of finished products from our manufacturing facility in India to the UK.”

“We are now able to meet the current and future market demand and will maintain close communication with the DHSC to monitor and address any potential issues that may arise.”

This week, the Guardian reported that the British Generic Manufacturers Association collected data showing a twofold increase in reported medicine shortages over the past two years. The DHSC stated that they do not acknowledge these statistics.

The DHSC representative stated that they have arranged a meeting with the MND Association for the upcoming Wednesday.

The individual stated that they acknowledge the difficulty and distress caused by shortages of medication and are aware of a problem with a particular 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.

Our goal is to enhance the well-being of those with MND. As a result, in November 2021, we pledged to invest a minimum of £50m in MND research for a period of five years. This will aid in advancing research and accelerating the development of treatments.


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