We live in an era of cost containment in health care. New therapies for motor neuron disease, just as for other diseases, are therefore properly subject to cost/benefit considerations. A new treatment in a disease may increase costs, as it may be more expensive to cure, or to alleviate suffering, than to do nothing. The cost of care for someone disabled by a disease that has been arrested by a medical intervention may be very large when continued for many years, as in renal dialysis or in many cancers. Healthcare costs are only truly saved when disease is prevented—for example, by immunisation, or when disability is prevented by timely treatment. No prospective evaluation of the cost of care for people with motor neuron disease, the expenses borne by their families and carers, or the opportunity costs consequent on the disease has been performed. Indeed, there is no currently accepted standard of care for people afflicted with this progressive fatal neurodegenerative disease. Thus, the health and social benefits of treatments and interventions in motor neuron disease cannot presently be calculated.

However, cost is not the only criterion to be applied in determining the value of a therapy. The level of benefit to the individual patient should always be the major relevant consideration.1 In a universal and budget limited system, such as the NHS, this is balanced by the needs of society as a whole. In the United Kingdom each citizen has an equal entitlement to the available NHS resource. The NHS, like other healthcare systems, has little direct control over the future costs of new therapies. The overall NHS resource is determined by a complex combination of largely politically determined factors.2 These include national and local resource allocation and prioritisation policies in relation to certain conditions and treatments, together …