London Daily

Focus on the big picture.
Sunday, Jul 06, 2025

MND Patients in England and Wales Face Loss of Access to Life-Extending Drug Tofersen Due to Unchanged NHS Cost Threshold Since 2004

People with Motor Neurone Disease (MND) in England and Wales are worried about losing access to the life-extending drug Tofersen due to the NHS cost threshold not being raised since 2004.
Tofersen has shown to slow down the progression of the illness in trials, but the chances of it being recommended for use in England and Wales are slim due to Nice's cost-effectiveness threshold of up to £30,000 per year of good-quality life.

In 2004, the National Institute for Health and Care Excellence (Nice) set a price threshold of £30,000 for a new drug treatment.

However, studies suggest that the threshold should be around £50,000 if adjusted for inflation.

Tofersen, a genetic therapy for Motor Neuron Disease (MND) made by Biogen, is expensive due to its administration method and hospital stays.

It is estimated to help 100 people in England and Wales with alterations in the SOD1 gene, which is not considered clinically distinct from the most common form of MND by Nice.

As a result, Nice is basing its assessment on the lower price threshold, causing disappointment among MND patients who had hoped for a higher threshold for extremely rare conditions.

The NHS is required by law to provide medicines approved by Nice.

Mike Thomas, a 59-year-old man from Bridgend, has been living with Motor Neurone Disease (MND) for four years and has been taking Tofersen as part of a trial since last June.

The treatment has shown significant improvements in his condition, including increased walking capacity and energy levels.

Thomas expressed his concern about the potential end of the treatment, stating that it is an essential source of hope for him.
Newsletter

Related Articles

0:00
0:00
Close
U.S. Enacts Sweeping Tax and Spending Legislation Amid Trade Policy Shifts
Football Mourns as Diogo Jota and Brother André Silva Laid to Rest in Portugal
Elon Musk Founds a Party Following a Poll on X: "You Wanted It – You Got It!"
London Stock Exchange Faces Historic Low in Initial Public Offerings
A new online platform has emerged in the United Kingdom, specifically targeting Muslim men seeking virgin brides
Trump Celebrates Independence Day with B-2 Flyover and Signs Controversial Legislation
Boris Johnson Urges Conservatives to Ignore Farage
SNP Ordered to Update Single-Sex Space Guidance Within Days
Starmer Set to Reject Calls for Wealth Taxes
Stolen Century-Old Rolls-Royce Recovered After Hotel Theft
Macron Presses Starmer to Recognise Palestinian State
Labour Delayed Palestine Action Ban Over Riot Concerns
Swinney’s Tax Comments ‘Offensive to Scots’, Say Tories
High Street Retailers to Enforce Bans on Serial Shoplifters
Music Banned by Henry VIII to Be Performed After 500 Years
Steve Coogan Says Working Class Is Being ‘Ethnically Cleansed’
Home Office Admits Uncertainty Over Visa Overstayer Numbers
JD Vance Questions Mandelson Over Reform Party’s Rising Popularity
Macron to Receive Windsor Carriage Ride in Royal Gesture
Labour Accused of ‘Hammering’ Scots During First Year in Power
BBC Head of Music Stood Down Amid Bob Vylan Controversy
Corbyn Eyes Hard-Left Challenge to Starmer’s Leadership
London Tube Trains Suspended After Major Fire Erupts Nearby
Richard Kemp: I Felt Safer in Israel Under Attack Than in the UK
Cyclist Says Police Cited Human Rights Act for Riding No-Handed
China’s Central Bank Consults European Peers on Low-Rate Strategies
AI Raises Alarms Over Long-Term Job Security
Saudi Arabia Maintains Ties with Iran Despite Israel Conflict
Musk Battles to Protect Tesla Amid Trump Policy Threats
Air France-KLM Acquires Majority Stake in Scandinavian Airlines
UK Educators Sound Alarm on Declining Child Literacy
Shein Fined €40 Million in France Over Misleading Discounts
Brazil’s Lula Visits Kirchner During Argentina House Arrest
Trump Scores Legislative Win as House Passes Tax Reform Bill
Keir Starmer Faces Criticism After Rocky First Year in Power
DJI Launches Heavy-Duty Coaxial Quadcopter with 80 kg Lift Capacity
U.S. Senate Approves Major Legislation Dubbed the 'Big Beautiful Bill'
Largest Healthcare Fraud Takedown in U.S. History Announced by DOJ
Poland Implements Border Checks Amid Growing Migration Tensions
Political Dispute Escalates Between Trump and Musk
Emirates Airline Expands Market Share with New $20 Million Campaign
Amazon Reaches Milestone with Deployment of One Millionth Robot
US Senate Votes to Remove AI Regulation Moratorium from Domestic Policy Bill
Yulia Putintseva Calls for Spectator Ejection at Wimbledon Over Safety Concerns
Jury Deliberations in Diddy Trial Yield Partial Verdict in Serious Criminal Charges
House Oversight Committee Subpoenas Former Jill Biden Aide Amid Investigation into Alleged Concealment of President Biden's Cognitive Health
King Charles Plans Significant Role for Prince Harry in Coronation
Two Chinese Nationals Arrested for Espionage Activities Against U.S. Navy
Amazon Reaches Major Automation Milestone with Over One Million Robots
Extreme Heat Wave Sweeps Across Europe, Hitting Record Temperatures
×