Muscular Dystrophy UK has submitted a consultation response to a Methods Review by the National Institute for Health and Care Excellence (NICE), which focuses on the way it evaluates new treatments.
The review is taking place because of advances in treatments, not just in the neuromuscular and rare diseases field, but across all health treatments and therapies.
NICE is therefore looking at the methods it uses for assessing new treatments and what needs to change.
NICE has put forward proposals for changes and the impact that this might have on future treatments going through NICE’s system and sought the views of patient organisations and other stakeholders through a consultation which closed last week.
Muscular Dystrophy UK welcomes some of the proposals made by NICE including the need for flexibility on uncertainty in projections for treatments for rare diseases, and taking into account a broader range of evidence.
However, the review’s remit does not extend to addressing broader problems with the NICE treatment appraisal structure, such as rare disease treatments like Spinraza being assessed in a system set up for more common conditions. We will continue to press NICE for action on these much needed wider issues.
Rob Burley, MDUK’s Director of Campaigns, Care & Support, said;
We are seeing an increasing number of novel therapies for people living with a muscle-wasting condition coming through, which is brilliant news. However, it is absolutely crucial that people can get access to the treatments as quickly as possible and decision-makers like NICE have systems in place that can support this.
We will share updates of any changes which are made as a result of this review and the impact this will have on future treatments for muscle-wasting conditions assessed by NICE.
Read more about our FastTrack campaign, focused on faster access to treatments.