Amyotrophic Lateral Sclerosis (ALS) patients experience with Edaravone in Argentina
Cecilia Quarracino1, Mariana Bendersky1, Natalia Bohorquez Morera2, Roberto Rey1, Gabriel Rodriguez2
1Neuromuscular, IADIN - Instituto Argentino de Investigaciones Neurológicas, 2Neuromuscular, Hospital Ramos Mejía
Objective:
To report the demographics and evolution of ALS patients treated with Edaravone in three ALS Clinics in our country.
Background:

Edaravone was approved by the FDA for ALS treatment in 2017. It is marketed in four countries, not yet in Argentina.

Design/Methods:
We analyzed the characteristics of the patients treated with Edavarone from 2016 up today.
Results:

Sixteen patients were treated with Edaravone. Most patients were male (87.5%) and only 2 patients (12.5%) had had bulbar onset. Their mean age at first infusion was 53.50 years (SD 14.87). All but one were also receiving riluzole.  Time since diagnosis to Edaravone’s first infusion was 19.8 months (SD 19.8) while that of riluzole was 3.07 (SD 2.8). The first infusion was usually received at a health care facility (75%) to later be followed by domiciliary cycles (87.5%). Half the patients received 4 or more cycles of infusion. Only one needed a port-a-cath for drug administration.  One patient suffered from thrombophlebitis while another had lower limb pain during infusion, which was alleviated in the following cycles with pre-treatment with antihistaminics. Two patients stopped treatment due to drug ineffectiveness. Three patients underwent tracheostomy (18.8%), one of which died shortly after and accounts for one of the three deaths (18.8%) in this cohort. Only 7 patients (47%) received the medication through their health insurance.

Conclusions:
In this group of patients, Edaravone was well tolerated. Access is still limited since less than half of the patients received treatment covered by their health insurance.