There is limited evidence of a modest benefit in tracheostomy-free survival for patients taking riluzole. However, the evidence is restricted and uncertainty remains as to the true benefit of riluzole; the CI is wide and compatible with little or no difference between riluzole and placebo. When costs and the health economic impact are considered when extrapolating survival beyond that observed in trials, the uncertainty about whether the benefits are worth the costs is magnified. Even under the most optimistic assumptions, riluzole at best only postpones death for a few months, and does not preclude the need for supportive care and practical help.
If riluzole were to be made available to all patients in whom it is not contraindicated, the annual cost to the NHS would be about 8.4 million GBP, assuming all these patients wish to take it. Many patients, given accurate information about the benefits and effects of riluzole, may choose not to. Patients should be made aware that riluzole does not cure amyotrophic lateral sclerosis (ALS); accurate patient information is essential.