Call for action over MND patients 'denied vital drug'

EXPRESS WINS PARTIAL U-TURN

- EXCLUSIVE BY LUCY JOHNSTON Social Affairs Editor

Teenager Lilia Jakeman was initially blocked from getting vital tofersen. Below, campaigners in Westminster Campaigners Terry Gorry and MP Steve Brine are fighting for tofersen

HEALTH Secretary Wes Streeting has been urged to act after it emerged that up to 20 people with deadly motor neurone disease were being denied a life-extending drug – despite it being offered free.

Ian Byrne, chair of the All Party Parliamentary Group on MND, wants the minister to intervene in what campaigners have described as a “cruel” postcode lottery.

The Labour MP for Liverpool West Derby recently highlighted in Parliament the case of 19-year-old Lillia Jakeman, who was told she could be treated with the drug tofersen when diagnosed with the devastating degenerative condition last August.

But University Hospital Southampton NHS Trust denied access to the drug while it awaits regulatory approval by the National Institute for Health and Care Excellence.

Yet hours after being contacted by this newspaper for comment, the trust did a U-turn and said it would now “facilitate” Lillia receiving tofersen at another hospital.

The drug was made available to the majority of other patients, approximately 45, who could benefit after trials showed it can slow and, in some cases, even halt or improve symptoms in patients with a particular form of MND.

It is available to patients in the UK through manufacturer Biogen under an early access programme, on the condition that the NHS provides time and resources for the monthly lumber puncture under the care of specialists.

But University Hospital Southampton was one of several hospitals which declined access, saying it could not fund this.