UK Campaigner Pushes for £8K MND Drug Access on NHS

Richard Brailsford watched his father lose his battle with Motor Neurone Disease 14 years ago, and now he's fighting to make sure other families get the hope his didn't have.

The Witney, Oxfordshire campaigner leads The MND Army and is calling for better NHS access to Tofersen, a treatment that genuinely slows MND progression for patients with the SOD1 gene variation. At £8,000 per patient, Richard calls it "a drop in the ocean" for the relief it provides.

"For 14 years we've been waiting for something real that could actually positively impact those with MND and we finally got there," Richard said. The treatment has shown it can slow and in some cases halt disease progress for about 2% of MND patients who carry the SOD1 gene.

Richard's journey began during his father's nine-month battle with the disease. He spent countless nights researching treatments online, finding nothing. "It tore my heart out," he shared, remembering how his dad was "destroyed by another symptom every single day."

That frustration and helplessness transformed into purpose. Richard became an "MND orphan" on a mission to change the future for other families facing the same devastating diagnosis.

Currently, Tofersen is available in England through an early access program run by manufacturer Biogen while the National Institute for Health and Care Excellence evaluates it for routine NHS use. NICE's evaluation begins in late March, with submissions expected in early June.

Why This Inspires

Richard's story shows how personal tragedy can fuel positive change that helps entire communities. His 14 years of campaigning weren't in vain. A treatment finally exists that offers real hope to families desperate for more time together.

The Department of Health and Social Care confirmed its commitment to improving MND care and said if NICE recommends Tofersen, NHS England will work to make it available "as rapidly as possible." That's the kind of response advocacy creates.

Richard's call for "health equality" reflects a simple truth: when effective treatments exist at reasonable costs, everyone deserves access regardless of geography or wealth.

Families waiting for this treatment now have a champion fighting for their chance at more precious moments together.