‘Drug ruling robs me of miracle fix for MND’
A MOTHER has been left devastated by a government decision expected to take away a “miracle drug” that has stopped her motor neurone disease from progressing.
Eleanor Dalley was given just 18 months to two years to live when diagnosed with a rare form of the terminal condition in 2019.
Just two per cent of MND sufferers have this specific condition caused by a mutation in a gene called SOD1.
She started taking tofersen, a promising new drug, in November 2022, through an early access programme following a trial.
Previously, Eleanor could not turn over in bed without using her arms to lift her legs but since the first treatment there has been “no further decline”.
However, the National Institute for Health and Care Excellence – a public body which is attached to the Department of Health – has now decided not to classify the new drug as treating a clinically distinct disease.
Experts say it is therefore “highly unlikely” to be made available on the NHS.
Eleanor, 48, feels that the “miracle she and her family have prayed for” is slipping out of reach, explaining: “There have been small but, for me, significant improvements... mini-miracles to me.
“My daughter said to me, ‘With this treatment it gives you hope, and it gives us a chance of a cure.’ I haven’t told her the latest news.”
Eleanor is also worried that tofersen will not be available if her 14-year-old daughter needs it, as her father and two of her aunts were diagnosed with MND. The Londoner added: “I told her there is a 50 per cent chance she will develop MND but said, ‘Let’s hope you get Daddy’s genes for this.’
“I never thought after my diagnosis I was going to get to 50 but now the date is in my diary and I’m planning for it.
“MND took my loved ones but it’s not going to take my hope for the future.”
A spokesperson for NICE said: “This therapy does not meet the criteria for the Highly Specialised Technologies programme. We will therefore not review this decision.”
The Sunday Express helped to secure £50million for research into treatments through our Fund The Fight To Cure MND crusade in 2021 but tofersen was found separately to this ongoing mission.