UPDATE: CAMPAIGN WIN!!!
On 18 November NICE announced that they have reconsidered their decision, and have agreed to assess tofersen via the Highly Specialised Technology (HST) route.
This is what our petition was asking for, and it means that there’s a much greater chance of tofersen becoming available on the NHS.
More than 15,000 people signed our petition in just a few weeks, sending NICE a powerful message about how important tofersen is – a groundbreaking new treatment for the 2% of people with MND who have an alteration in the SOD1 gene. And NICE listened.
Thank you so, so much for signing the petition and being part of this amazing victory!
Prescribe Life: our campaign to find a way forward for tofersen.
I’m one of the 2% of people with MND caused by a fault in the SOD1 gene. A new treatment, tofersen, could slow or stop the progression of my disease. But a standoff between the government and the company behind it means it won’t be approved for NHS use anytime soon.
Please sign this petition to help unblock the process and bring tofersen closer to NHS approval.
I currently get tofersen through an Early Access Programme, but future SOD1 patients—including my family—may not. NICE has refused to evaluate it using the method most likely to get it approved, despite their guidance allowing exceptions for game-changing treatments for severe conditions like MND.
If tofersen isn’t worth an exception, what is? Together with the MND Association, I’m launching the Prescribe Life campaign, calling on NICE to reconsider and give tofersen a real chance of being available on the NHS for the 60-100 people in the UK with the SOD1 gene variation.
