The Hapless State of Amyotrophic Lateral Sclerosis in India: A comprehensive look at life and medical services for ALS patients in rural Himachal Pradesh
Amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease is a neurodegenerative disorder that leads to paralysis. The disease requires a high amount of medical intervention and interdisciplinary focus to achieve quality of life for patients. This study looks at ALS patient’s lifestyles, their access to these medical devices, Indian therapeutic approaches and policy that impacts patients in Shimla, Himachal Pradesh. As caretakers have a critical part in the care for this disease, their lives were also considered in the case studies. It was found that ALS patients are not experiencing access to medical devices necessary for life because of physical accessibility barriers, financial barriers and a lack of knowledge about the disease. Knowledge of government healthcare financial policy and awareness of services offered by Asha Ek Hope to improve the access to these devices for ALS patients was not found in the study. Access to one of two pharmaceuticals was found to be achieved across the study group, however, the treatment methods for edaravone were inaccessible because of physical barriers and finances. With no known cure for the disease, the focus switches towards the Indian perspective on life and offering a death with dignity and comfort. It was found that ALS patients and their caregroups do not support passive euthanasia as determined by a 2018 Supreme Court decision while palliative care was found to be inexistent despite a dire need for this supportive care for families and patients living with ALS. The findings of this study shed light on the dire need for support of these patients in accessing devices and political advocacy. This study also brings public health awareness to the rare disease community in India—breaking down the public health and rare disease oxymoron
