The health secretary, Victoria Atkins, has been criticized for not ensuring the availability of the sole medication that can extend the lives of those with motor neurone disease by several months. This comes despite officials being informed of a shortage in the drug last fall.
In August, individuals suffering from Motor Neurone Disease informed the Motor Neurone Disease Association about a scarcity of riluzole, a medication that may delay the need for ventilator support. The Department of Health and Social Care was notified of this issue in September.
The MND Association has reported that people suffering from terminal illness in England, Wales, and Northern Ireland are still facing shortages of riluzole 50mg tablets, despite the DHSC’s statement in December that Glenmark had agreed to expedite the drug’s release onto the UK market.
Atkins, who was assigned her position in November during the government’s latest restructuring following the removal of former Home Secretary Suella Braverman, has allegedly not responded to a letter sent by MND Association CEO Tanya Curry in December.
According to reports, DHSC officials did not reply to two subsequent emails requesting additional details, causing increased fear among individuals with motor neurone disease. This condition damages parts of the nervous system, resulting in muscle weakness and visible wasting, often leading to death. Approximately 5,000 adults in the UK are affected by MND at any given time, with a life expectancy of one to five years after diagnosis.
The MND Association reports that individuals who have recently been diagnosed and wish to prolong their lives for a few extra months are being refused their sole treatment option due to limited availability. The association stated, “Individuals with MND should not have to use their limited time battling for access to the medication they rightfully deserve.”
In the final quarter of 2023, there was a deficit of hyoscine hydrobromide 1.5mg patches, commonly utilized by individuals with MND to manage excessive saliva production.
Alex Massey, the MND Association’s head of campaigning, policy, and public affairs, stated that there was a discrepancy between the government’s assertions of addressing the issue and the actual experience of individuals searching for riluzole.
According to him, individuals diagnosed with MND have been unable to obtain their prescribed medication, riluzole, since last fall. Riluzole is the sole treatment option for this condition.
“We have brought up this matter multiple times with the Department of Health and Social Care, but they have not given a clear explanation for the ongoing supply problems or offered a solution. It is imperative that the department takes immediate action to ensure that all individuals with MND have access to the necessary medication that they are entitled to.”
According to Massey, the situation has not improved despite officials stating that new supplies were being introduced to the market.
According to him, individuals are still reaching out to express their inability to refill their prescriptions. Pharmacists are also reporting that necessary supplies are consistently out of stock and they are unable to order them.
I recently spoke to Community Pharmacy England, and they confirmed that they are still experiencing issues this month. Pharmacists are reporting shortages, despite the Department of Health claiming that more supplies have been released. It’s a confusing situation, as there seems to be a disconnect between what we are being told and what is actually happening in terms of people’s experiences.
“I have followed up with the Department of Health regarding this inconsistency, but we have not received any response from them since Christmas. Despite reaching out to them multiple times this month, we have not heard back from them.”
Martin Imms, the senior director and country manager of Glenmark, a pharmaceutical company, stated that several manufacturers have exited the UK market, resulting in a lack of available stock. The DHSC alerted us to this issue and we have diligently collaborated with our internal teams, including our integrated supply function, to fulfill the demand for this product.
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“Being a worldwide company with a business presence in 80 different countries, we must consider numerous competing priorities. Combined with our limited supply capabilities, it took us a considerable amount of time to reach a resolution.”
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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 currently able to meet the entire market demand and will remain in close collaboration with DHSC to monitor and address any potential issues that may arise in the future.”
Earlier this week, the Guardian reported that data collected by the British Generic Manufacturers Association indicated that there has been a twofold increase in the number of reported shortages for medicines over the past two years. The DHSC stated that they do not acknowledge these figures.
A representative from the DHSC stated that they have arranged a meeting with the MND Association for the upcoming Wednesday.
He stated that they recognize the frustration and distress caused by medication shortages and are aware of a problem with a supplier of riluzole.
Other suppliers have verified they have inventory on hand and are able to fulfill the demand. We are also collaborating with manufacturers to ensure that individuals with motor neurone disease have continued access to necessary medications.
“We have a strong determination to enhance the quality of life for those with MND. This is why, in November 2021, we made a pledge to allocate a minimum of £50m towards MND research over the course of five years. This funding will assist in advancing groundbreaking research and accelerating the development of treatments.”
Source: theguardian.com
