Video to Wes Streeting sees emotional plea for tofersen access

A woman struggling to access a revolutionary treatment for motor neurone disease has made an emotional plea to Health Secretary, Wes Streeting MP to take urgent action.

In the video, retired teacher Seckin McGuirk urges the Health Secretary, Wes Streeting MP, to intervene and provide tofersen to people with SOD1 MND. 

Tofersen is a new treatment that is effective for roughly 2% of people with MND who have a particular genetic change.  

The plea, which featured in today’s Daily Express, follows our day of action in July to raise awareness of our Prescribe Life campaign. An ice sculpture of Seckin was stationed in Parliament Square Garden, and a petition with more than 21,000 signatures was handed to the Department of Health and Social Care.

Over 30 people with MND are currently taking tofersen through an Early Access Programme, offered free by its developer Biogen.

However, 20 others aren't able to receive the drug because there is no local service able to administer it through the monthly lumbar puncture required.

Richard Evans, Director of Engagement at the MND Association, said: “Every day that people are missing out on this drug means another day that their MND symptoms progress.  

“Tofersen remains free and has now been licensed by the Medicines and Healthcare products Regulatory Agency (MHRA). We can’t accept that the resources to administer this life-saving treatment to Seckin and just 20 other people living with SOD1 MND cannot be found. Put simply – they don’t have time to wait.”

Following the MHRA’s marketing authorisation,  Biogen has confirmed it will now submit the drug to the National Institute for Health and Care Excellence (NICE) to determine if it will be made available on the NHS.

Richard added: “The Health Secretary, Wes Streeting, has the power to intervene - the All-Party Parliamentary Group on MND has requested a meeting with him.

“We’ve urged him to listen and engage with us, we hope now he will sit up and take notice of this powerful message Seckin is sending directly to him.

“This shocking situation can’t go on any longer.”

The process by which a new drug is evaluated for use in the UK has been outlined in an infographic developed by the MND Association, MND Scotland and My Name’5 Doddie Foundation.