Health and Me

Itisha Arya

Why Was A Free MND Drug Denied To NHS Patients?

MND Drug Denied On NHS

Although the Medicines and Healthcare Products Regulatory Agency has cleared <span>Tofersen</span> for use, <span>NHS</span> patients are still unable to receive the motor neurone disease treatment because of administrative hurdles and related problems, The Telegraph has reported.

Tofersen targets the underlying cause of <span>MND</span> in patients with a specific inherited mutation. It prevents harmful proteins from clumping together in the brain and spinal cord, a process that damages motor neurones. Doctors have reported that some patients have seen their symptoms ease after starting the drug.

<h2><span rel="noindex">MND Drug Denied On NHS</span></h2>

The Medicines and Healthcare products Regulatory Agency approved Tofersen for use in the UK in 2025. The drug is already available to patients in Europe and the United States. However, it is still under review by the National Institute for Health and Care Excellence, which decides whether medicines should be routinely funded by the NHS based on benefit and value for money.

While this assessment continues, Biogen, the biotechnology company behind Tofersen, has agreed to an early access arrangement with the NHS. Under this deal, the drug is being supplied free of charge on compassionate grounds.

Despite the free supply, dozens of patients are missing out. Several NHS trusts are unwilling to fund the additional costs linked to administering the treatment, such as staffing and hospital resources.

<h2><span rel="noindex">MND Drug</span> Denied On NHS: At Least 20 Patients Denied Treatment</h2>

Data shared with The Telegraph shows that at least 20 patients have been refused access to Tofersen. The MND Association has described the situation as one where the drug could mean the “difference between life and death”.

<h2>Charity Calls for Government Action</h2>

Alex Massey, head of campaigning, policy and public affairs at the MND Association, said everyone with this form of MND should receive the drug, as per The Telegraph.

“We are talking about a small amount of extra resource for something that could be the difference between life and death,” he said. “People with MND do not have time to wait, so we urge the Government to step in and break the deadlock.”

Around 5,000 people in the UK are living with MND at any one time, and about one in 10 has a family history of the condition. Most diagnoses occur in people in their 60s, with average life expectancy ranging from two to five years.

MND causes the nerve cells that control movement to fail, leading to progressive weakness and mobility problems. Early symptoms often include weakness in the hands, legs or feet, making tasks such as climbing stairs or gripping objects difficult.

As the disease advances, patients may experience muscle twitching, spasms and cramps. Many develop difficulties with breathing, swallowing and speech, along with changes in mood or personality. In later stages, walking and movement can become extremely limited.

<h2>Limited Treatment Options Available</h2>

About 1,500 people are diagnosed with MND each year, yet treatment choices remain scarce. Only a small proportion of patients currently qualify for therapies that target the disease process itself.

Roughly two per cent of MND cases involve a mutation in the SOD1 gene, which causes a form of the disease known as amyotrophic lateral sclerosis. This mutation leads to faulty proteins that build up in the brain and spinal cord instead of breaking down harmful substances, damaging nerve cells.

Tofersen is designed to target this genetic fault. Clinical trials showed that the drug reduced levels of the toxic protein in spinal fluid and lowered markers of nerve damage in the blood.

The MND Association says 44 patients are currently receiving Tofersen, but at least 20 eligible patients have been refused. Only eight of the 24 specialist neurology centres capable of delivering the treatment have opted to do so.

An NHS spokesperson said some hospitals have worked hard to find extra staff and resources to take part in the early access programme and provide Tofersen safely to eligible patients.

They added that the NHS is encouraging Biogen to complete the Nice appraisal process, which is the only way the drug can be formally recommended as a safe, effective and cost-efficient treatment for all eligible patients in England.

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Although the Medicines and Healthcare Products Regulatory Agency has cleared Tofersen for use, NHS patients are still unable to receive the motor neurone disease treatment because of administrative hurdles and related problems, The Telegraph has reported.What Is Tofersen?Tofersen targets the underlying cause of MND in patients with a specific inherited mutation. It prevents harmful proteins from clumping together in the brain and spinal cord, a process that damages motor neurones. Doctors have reported that some patients have seen their symptoms ease after starting the drug.MND Drug Denied On NHSThe Medicines and Healthcare products Regulatory Agency approved Tofersen for use in the UK in 2025. The drug is already available to patients in Europe and the United States. However, it is still under review by the National Institute for Health and Care Excellence, which decides whether medicines should be routinely funded by the NHS based on benefit and value for money.While this assessment continues, Biogen, the biotechnology company behind Tofersen, has agreed to an early access arrangement with the NHS. Under this deal, the drug is being supplied free of charge on compassionate grounds.Despite the free supply, dozens of patients are missing out. Several NHS trusts are unwilling to fund the additional costs linked to administering the treatment, such as staffing and hospital resources.MND Drug Denied On NHS: At Least 20 Patients Denied TreatmentData shared with The Telegraph shows that at least 20 patients have been refused access to Tofersen. The MND Association has described the situation as one where the drug could mean the “difference between life and death”.Charity Calls for Government ActionAlex Massey, head of campaigning, policy and public affairs at the MND Association, said everyone with this form of MND should receive the drug, as per The Telegraph.“We are talking about a small amount of extra resource for something that could be the difference between life and death,” he said. “People with MND do not have time to wait, so we urge the Government to step in and break the deadlock.”How Common Is MND In The UKAround 5,000 people in the UK are living with MND at any one time, and about one in 10 has a family history of the condition. Most diagnoses occur in people in their 60s, with average life expectancy ranging from two to five years.What MND Does to the BodyMND causes the nerve cells that control movement to fail, leading to progressive weakness and mobility problems. Early symptoms often include weakness in the hands, legs or feet, making tasks such as climbing stairs or gripping objects difficult.As the disease advances, patients may experience muscle twitching, spasms and cramps. Many develop difficulties with breathing, swallowing and speech, along with changes in mood or personality. In later stages, walking and movement can become extremely limited.Limited Treatment Options AvailableAbout 1,500 people are diagnosed with MND each year, yet treatment choices remain scarce. Only a small proportion of patients currently qualify for therapies that target the disease process itself.Roughly two per cent of MND cases involve a mutation in the SOD1 gene, which causes a form of the disease known as amyotrophic lateral sclerosis. This mutation leads to faulty proteins that build up in the brain and spinal cord instead of breaking down harmful substances, damaging nerve cells.Why Tofersen Is DifferentTofersen is designed to target this genetic fault. Clinical trials showed that the drug reduced levels of the toxic protein in spinal fluid and lowered markers of nerve damage in the blood.The MND Association says 44 patients are currently receiving Tofersen, but at least 20 eligible patients have been refused. Only eight of the 24 specialist neurology centres capable of delivering the treatment have opted to do so.NHS ResponseAn NHS spokesperson said some hospitals have worked hard to find extra staff and resources to take part in the early access programme and provide Tofersen safely to eligible patients.They added that the NHS is encouraging Biogen to complete the Nice appraisal process, which is the only way the drug can be formally recommended as a safe, effective and cost-efficient treatment for all eligible patients in England.