MND drug Tofersen access: a postcode lottery

Eleanor Dalley, diagnosed with motor neurone disease (MND) in 2019, gained access to Tofersen through Biogen’s early‑access programme and now reports her symptoms have stalled. The drug, first authorised by the UK Medicines and Healthcare Regulatory Agency in July and offered free to NHS patients, still faces a postcode lottery because many trusts lack staff to administer routine spinal injections. Sky News records that 20 people have been denied access while four unrelated patients have died awaiting the therapy, a figure highlighted by the All‑Party Parliamentary Group on MND. Only about 2 % of MND cases are caused by the inherited SOD1 mutation that Tofersen treats. The UK National Institute for Health and Care Excellence will begin its evaluation in March, with ministers reluctant to intervene before the official review.