UPDATE: HUGE 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!
Read more in a blog post from Richard, our Director of Engagement.