A heartwrenching coverage of a rare neurodegenrative disorder called spinocerebellar ataxia (SCA) that runs in families in various parts of India that practice endogamy.
The apathy, the stigma, the need and lack of funds for basic research, the lack of funds for clinical support etc., etc., are all documented.
"The Indian government spends less than 1 percent of its Gross Domestic Product on scientific research. (China, in comparison, spends 2.2 percent, and Japan 3.4 percent.) In this year’s budget, the government has slashed funds for science by about 4 percent from last year. "
"Basic’ research, important for understanding the working of diseases at the cellular level, gets the short shrift in this approach. From data accessed under the Right To Information Act, I learnt that of the ₹32 crore received by the IGIB from the Council of Scientific and Industrial Research between 2015 and 2021, only 2.5 per cent (₹80.5 lakh) was deployed for targeted basic research."
(32 crores is roughly 4 million $ and 80.5 lakh is 100K$ currently. That's it, and that's over 7 years and nation wide!)
https://fiftytwo.in/story/off-balance/
#India #Healthcare #NeurodegenerativeDiseases #RareDiseases #BasicResearch #Neurology #Ataxia #SocialStigma #GeneticDiseases