Walton – Equity of Access to Riluzole for Individuals with MND/ALS in the UK

Author(s): Schluter D.K.; James B.E.; Mills R.; Young C.A.

Source: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; 2018; vol. 19 ; p. 365

Publication Date: 2018

Publication Type(s): Conference Abstract

Abstract:Background: Riluzole is the only drug currently licensed in Europe for treating ALS and a number of clinical trials have demonstrated that it increases tracheostomy-free survival by several months. There have been concerns in the United States that access to riluzole has been dependent on socio-economic factors. A similar story made the headlines in the UK in 1999 when access was found to be dependent on postcode (1). The establishment of NICE since then was aimed at ensuring “Equitable access to treatments of proven clinical and cost effectiveness” (2). Objective(s): To examine whether access to Riluzole in the UK is independent of socio-economic factors. Method(s): 636 individuals with MND were recruited into the ongoing Trajectories of Outcomes in Neurological Conditions (TONiC) study from MND clinics across the United Kingdom. Participants completed a questionnaire pack, which included questions about demographics, education and treatments received over the past 3 months. Postcodes were used to derive area level (based on the 2011 census) deprivation scores using the 2015 government index of multiple deprivation. Associations between treatment with Riluzole and sex, deprivation and education were estimated using logistic regression and statistical significance was assessed with the likelihood ratio test with p<0.05. Result(s): Data on treatments were missing in 20 individuals. 312 out of the remaining 616 individuals had been treated with Riluzole in the 3 months prior to them completing the questionnaire. Deprivation scores were available in 512 individuals and education data were only available in 338 (the education questionnaire was added to the pack after the study had already commenced, therefore missingness was by design and not informative in this case). In all individuals that had data on treatments and sex, sex was not found to be associated with Riluzole treatment. In the subsets in which data were available on treatments and deprivation or treatments and education, respectively, neither deprivation nor education were found to be associated with Riluzole treatment. Discussion and conclusions: In this study there was no evidence suggesting that access to Riluzole for MND patients in the UK depends on socio-economic factors.

Database: EMBASE

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