Read more of Faye’s report here: https://news.sky.com/story/postcode-lottery-means-groundbreaking-mnd-drug-is-a-lifeline-for-some-but-mental-torture-for-others-13500695
Eleanor Dalley and Lillia Jakeman both have motor neurone disease, but only one has been granted access to a breakthrough treatment that can halt its symptoms.
Tofersen is the first effective treatment for MND symptoms. Eleanor was able to get it through an early access programme ran by its manufacturer Biogen, which is currently offering it to the NHS for free.
However, it requires regular spinal injections, and while the drug itself is free, some NHS trusts say they don’t have the staff or resources to administer it.
These issues have resulted in a postcode lottery for access, with people like 19-year-old Lillia Jakeman losing out.
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