Hyderabad: The Multiple Sclerosis Society of India (MSSI) on Sunday launched a unique crowd-sourced mapping exercise to study the prevalence of multiple sclerosis (MS) in India, as a first step towards educating policymakers and lawmakers about the disease.
MS is a rare progressive disease of the nervous system. People living with MS are at the risk of being overlooked as there is no comprehensive data on them in the country. “They are not counted and therefore are missing from national health data, health policy, insurance or research,” said Nazia Erum, a member of the society, who conceived the idea of the India MS map.
The society plans to use the information provided in the India MS map as an advocacy tool – shining a spotlight on MS in India and raising awareness on the lack of adequate information available in India about the prevalence of multiple sclerosis. “We hope that this will be used by researchers, policymakers and advocates for asking for a formal comprehensive mechanism at the national level for tracking MS cases,” she said.
Currently, the state and the Central governments are facing a data deficit, as they are under the impression that MS is a rare disease. But, as it turns out, the absence of data forms barriers in access to affordable treatment, policy formulation and research for the neurological condition.
“Data from a 2020 worldwide study shows that the number of people with MS across the globe has increased from 2.3 million in 2013 to 2.8 million in 2020 and highlights the many barriers and inequalities that people with MS face in accessing diagnosis, treatment and care,” says its website....