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https://economictimes.indiatimes.com/blogs/et-editorials/rare-diseases-call-for-stepped-up-rd/
The last day of February is observed as the day of rare diseases, a group of some 7,000 afflictions that mar the lives of some 300 million people around the world, or 4% of the population. There is no real estimate of rare disease patient numbers in India, since diagnosis is difficult and often absent, but there is no reason to believe that it would be lower than the global average, which itself is likely an undercount. The government has, for the first time, come out with a policy on rare diseases, a few of which can be cured while the rest call for management.
The numbers are not large; so, the cumulative expenditure on treating/managing rare diseases is not high, as a proportion of the total healthcare budget, it can be ruinously high for individual patients, especially as no insurance would cover these illnesses. Yet, the government finds it difficult to set aside the amount required, given the claims on its meagre allocation for health. The policy document suggests crowdsourcing contributions to a dedicated fund for rare diseases. This is not the ideal solution, but is a step forward. However, as Viswanath Pingali of IIM, Ahmedabad, points out, the rules need to be amended to make contributions to the proposed rare disease fund eligible to be counted as corporate social responsibility. Treatment and disease management are only one part of the rare disease challenge. Where India can make a real difference is in research. Many drugs and therapeutic procedures — whether cholesterol reduction drugs or chemotherapy — have come out of research into rare diseases. In other words, R&D related to rare diseases can yield not just treatments for those diseases but significant collateral benefits that improve healthcare in general.
Most rare diseases arise from gene abnormalities. Studying them can contribute to signal advances in synthetic biology, a frontier area of advanced manufacturing. India has the world’s largest pool of young people who can be trained to carry out the needed R&D. Policy should provide them with direction and encouragement.
