Disaster Preparedness for Patients with ALS: An Important but Neglected Issue

Disaster Preparedness for Patients with ALS: An Important but Neglected Issue

Amyotrophic lateral sclerosis (ALS) is a debilitating disease that affects the motor neurons and currently has no known cure. Individuals with ALS often require ventilator assistance and the use of electrical equipment to sustain their lives. In the event of a disaster, such as transportation disruptions or power outages, these patients face significant challenges.

The preparedness of ALS patients and their caregivers for disasters is a critical issue that has not received adequate attention. A recent study conducted by Professor Osamu Kano, M.D., Ph.D., and his colleagues in Japan explored the disaster preparedness of ALS patients and their caregivers. The findings revealed that over 70% of respondents were ill-prepared for disasters.

Shockingly, 86% of the respondents had no contingency plans for alternative means of communication in the event of phone line failures. Additionally, only 30% of respondents who use ventilators had secured human resources for transportation. Furthermore, 25% of respondents did not stockpile food and beverages, and 12% of ventilator users lacked essential equipment recommended by local governments, such as bag-valve masks or external batteries.

Even among those who possessed the recommended equipment, 75% admitted to lacking knowledge on how to use a bag-valve mask. Additionally, approximately 40% reported having poorly charged external batteries for their equipment.

The results of this study highlight the urgent need for improved disaster preparedness among ALS patients and their families. While efforts have been made by academic societies and local governments to address this issue, there is still much work to be done. The publication of this study in the Journal of Clinical Neuroscience aims to stimulate further discussion and action towards enhancing disaster preparedness for ALS patients.

– Takehisa Hirayama et al, The necessity to improve disaster preparedness among patients with amyotrophic lateral sclerosis and their families, Journal of Clinical Neuroscience (2023). DOI: 10.1016/j.jocn.2023.08.002

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