Home / Health / Family walks for life-saving MND drug access
Family walks for life-saving MND drug access
24 Jan
Summary
- Family walks from Southampton to Westminster for MND drug.
- Drug Tofersen shows promise in slowing rare MND form.
- NICE evaluation for routine NHS funding due late March 2026.
A family has embarked on a walk from Southampton to Westminster, a journey initiated on Friday, January 23, 2026, to advocate for immediate access to Tofersen, a groundbreaking drug for motor neurone disease (MND).
Lillia Jakeman, a 19-year-old from Romsey, Hampshire, has a rare SOD1 gene variation of MND. Tofersen has demonstrated an ability to slow the disease's progression in patients with this specific genetic marker.
University Hospital Southampton has stated it lacks funding to provide Tofersen via an early access program. A Department of Health and Social Care spokesperson indicated that the National Institute for Health and Care Excellence (NICE) is currently evaluating the drug's routine funding by the NHS.
The family's protest walk is scheduled to conclude on Wednesday, January 28, 2026, with the submission of a letter and petition to Downing Street. They hope to highlight the urgent need for action, as deliberations in Parliament have yielded no progress over the past 18 months.
NICE's evaluation of Tofersen for routine NHS use is anticipated to commence in late March 2026, with submissions expected in early June. Lillia, who now relies on a wheelchair, expressed her fear of losing more function daily and believes the drug would alleviate this anxiety.
