Prescribe Life

Motor neurone disease (MND) is a devastating neurological disease which leaves people unable to speak, eat and eventually breathe. There are no effective treatments. A third of people die within a year of diagnosis.

Thanks to pioneering research, an exceptional new treatment, tofersen, has shown to slow and even stop disease progression in people affected by the SOD1 genetic form of MND.

However, red tape and a stand-off between regulators NICE, and pharmaceutical company Biogen, meant this potentially life-changing drug wouldn’t even be considered for use on the NHS.

The MND Association launched Prescribe Life with a very clear goal – we needed NICE to reverse its decision around how to appraise the drug.

The situation was complex and based around regulatory processes. But we focused our campaign on the people with SOD1 MND directly affected by NICE’s decision. And we made the ask simple – sign a petition aimed directly at NICE.

Just weeks after launching our campaign, securing national and regional coverage, and using our social media channels to full effect, NICE announced they were reversing their decision. It was a staggering victory with, and for, people with SOD1 MND.