LAUSR

Dear Sir, In the absence of a curative therapy, the management of amyotrophic lateral sclerosis (ALS) remains focused on symptom control, with the primary aim of maintaining quality of life. Guidelines emphasize the optimal management of ALS that requires a multidisciplinary team including early access to specialist palliative care services and early noninvasive mechanical ventilation (NIV) (1). At the present time riluzole has been established as the only effective neuroprotective therapy for ALS. Use of riluzole (389 euros/month) would substantially increase the cost of medications for this disease (2). The economic burden of ALS is heavily dependent upon the severity of the disease and likely to be dependent on country-specific healthcare policies. There are few published reports of the direct costs, indirect costs and intangible costs of ALS care and there is limited literature quantifying the nonmedical costs associated with this disease. We have read with great interest the study by Meng et al. (3) that determines ALS-associated costs in the US incurred by patients covered by Medicare and/or commercial insurance before, during and after diagnosis and provides cost details. Newly diagnosed ALS patients’ medical costs are substantial and increase rapidly and substantially with each disability milestone. However, in our opinion, some key aspects need to be taken into account for valid clinical extrapolations. First, this analysis only includes Medicare and commercial costs that are direct costs requiring actual payment, such as those owed mainly to the healthcare sector for treatment of the disease. Additionally, other important aspects is that the time-frame and costs of the pre-diagnosis phase can vary depending on the rate and characteristics of disease progression, neurologists’ use of established, generally accepted diagnostic criteria, and the patient’s interest in seeking second and third opinions. We think that the relationship between costs and patients’ treatment decisions is vital to ensure patients are able to make fully informed decisions. For example, many people with ALS decline one or both invasive interventions (tracheostomy or percutaneous endoscopic gastrostomy (PEG)). This is the reason why the costs will vary greatly depending on the interventions a patient decides to accept and the degree of family support and involvement in care. This argument is supported by Traynor et al. (4) and Chiò et al. (5), who found an improved survival rate in patients with ALS attending multidisciplinary ALS care centres, in addition to a reduced hospitalization rate. Augmentative communication equipment varied greatly in costs, ranging from $38 for an eye-blink board to $30,675 for a computer system with ALS-specific software. Secondly, indirect costs are those which do not require direct payment since they represent lost resources. These costs include production losses due to illness-related absence from work or days lost from housekeeping. Intangible costs are virtually impossible to measure as they comprise a reduction in the quality of life. Currently it is unknown what the economic impact of ALS on society is. Thirdly, there are also direct non-medical costs for ALS patients, which include adaptations in the home, special means of transportation and aids and appliances needed to perform activities of daily life.