Research estimates that a successful treatment for motor neurone disease could be worth billions
New research commissioned by Challenge Works and undertaken by the Office of Health Economics (OHE) estimates that a successful treatment for amyotrophic lateral sclerosis (ALS), the most common form of motor neurone disease (MND), could be worth billions.
If advances in detection and treatment could effectively eradicate ALS, this would achieve a 10-year value upwards of £108 billion across seven key markets: the UK, US, Canada, Australia, Italy, Germany and France.
Depending on assumptions around treatment efficacy, the research estimates that, in the US, the commercial value of a successful treatment could be worth approximately £14-30 billion over 10 years; in the UK, around £1.2 billion.
ALS is a progressive neurodegenerative disease that damages the nerves in the brain and spinal cord called motor neurones. Signals from the brain stop reaching muscles, leading to severe muscle degeneration. Eventually this affects the muscles that are used to swallow food and drink, and those used to breathe.
There is a one in 300 chance that a person will develop MND in their lifetime and it can affect adults of any age. Around 90 per cent of cases will have ALS, which is a rare but devastating disease. Despite this, progress in the development of new diagnostics and treatments has so far been limited, and it is currently incurable.
The disease places a high burden on the healthcare system, with estimates suggesting £133 million is spent on the medical management of ALS in the UK per year, and $2.5 billion in the US. However, by including societal costs, such as caregiving and lost productivity, these estimates approximately triple.
However, research into ALS is at a pivotal moment, thanks to an uptick in funding, a growing understanding of the disease, increased availability of large-scale datasets, and an expanding number of AI and in-silico technologies that can accelerate drug discovery.
Recognising this, the Longitude Prize on ALS was launched on 25 June 2025: a £7.5 million prize to incentivise the creation of AI-based approaches to transform drug discovery for the treatment of ALS. It is principally funded by the Motor Neurone Disease Association, and designed and delivered by Challenge Works.
Tris Dyson, Managing Director at Challenge Works: “For too long, ALS has been an area of high risk and low investment, but things are changing. Advances in AI, combined with better understanding of the disease and higher volumes of patient data, mean that we find ourselves at a turning point for uncovering potential new treatment pathways.
“OHE’s research quantifies the significant value this would bring to individuals and societies, and we hope the Longitude Prize on ALS will mark a step towards discovering new treatments, and edge us ever closer to a cure.”
The Longitude Prize on ALS is seeking innovators from across medical research, biotech, techbio, pharmaceuticals and AI. Teams will be judged on the potential for their approach to identify and validate drug targets driving understanding of the disease and supporting onward translation into drug discovery. The entry window remains open until 3 December 2025.
Dr Amanda Cole, Director, OHE, said: “The burden of ALS is particularly stark when expressed in terms of quality-adjusted life years (QALYs) lost. In the UK, an individual diagnosed with ALS may lose (on average) 12.6 QALYs over their lifetime.
“Furthermore, ALS patients require intensive care, placing huge strain on healthcare systems, as well as families and support networks. The value of an effective treatment would be significant, and lifechanging for those living with the disease.”
An esteemed independent panel of global experts was assembled to judge submissions for the Longitude Prize on ALS.
Dr Vishal Gulati, Founder and Managing Partner, Recode Ventures and Longitude Prize on ALS judge, said: “ALS offers biopharmaceutical companies strategic convergence where urgent unmet need meets compelling commercial opportunity.
“Investing here makes strategic sense: rapid disease progression enables shorter, more cost-effective trials; approved treatments have seen fast uptake; platform trials allow multiple drugs to be tested efficiently; and orphan status accelerates regulatory approval.
“Crucially, ALS also acts as a proof-of-concept for technologies that could be applied to other neurodegenerative diseases, unlocking further opportunities. Breakthroughs are urgently needed, and OHE’s research makes a strong case for investing in this area.”
