Family walks to Westminster in fight for MND drug

The family of a 19-year-old with motor neurone disease (MND) are walking from Southampton to Westminster to call for urgent access to a groundbreaking drug.

Lillia Jakeman, of Romsey in Hampshire, has a rare form of MND which the drug Tofersen has been shown to slow.

But it has not yet been approved for use on the NHS and University Hospital Southampton said it does not have funding to deliver the drug through an early access programme.

A Department of Health and Social Care (DHSC) spokesperson said NICE was working with the manufacturer on whether Tofersen should be routinely funded by the health service.

Dr Rachel Jakeman, Lillia's stepmother and an NHS doctor, said: "For me, having spent a lifelong career in the NHS, it's probably the worst health inequality I've ever seen.

"If it's available to some, it should be available to all."

Lillia has MND with the SOD1 gene variation, which is thought to affect about 2% of people with the condition.

Tofersen, made by Biogen, has been shown to slow and, in some cases, even halt the progress of MND for those with SOD1.

The family hopes the walk raises awareness of the situation and encourages the government to take action.

It started on Friday 23 January at Southampton General Hospital and will end in Westminster on Wednesday 28 January as the group submits a letter and petition to Downing Street.

Dr Jakeman said they had had conversations with Romsey and Southampton North MP Caroline Nokes and MP for Liverpool West Derby Ian Byrne, who chairs the All-Party Parliamentary Group on MND.

She continued: "It's been deliberated on in different meetings in Parliament for about 18 months and it's no further forward.

"These people just do not have time to wait."

Lillia, who now has to use a wheelchair as a result of her deteriorating condition, previously told the BBC she believed the drug would stop the disease progressing further.

She said: "I wake up every morning fearing that I've lost something and if I was to access tofersen I wouldn't have that fear anymore.

"It's a life-extending treatment and to deny that to people is disgusting."

Tofersen is currently available in England through an early access programme run by its manufacturer, while NICE considers whether it should be approved for routine NHS use.

In its latest update, NICE said its evaluation is due to begin in late March 2026, with submissions expected in early June.

A DHSC spokesperson said: "We are committed to improving care for people with motor neurone disease like Lillia and ensuring they receive the support and treatment they need.

"Tofersen is approved for use in the UK and NICE is working with the manufacturer on whether to recommend it for routine funding by the NHS.

"If recommended NHS England will work to make it available to NHS patients as rapidly as possible."

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