The burden of rare diseases in India

The burden of rare diseases in India

The burden of rare diseases in India

Mysuru, Karnataka: Rare diseases are what they sound like. They affect fewer individuals in a population, often one in 1,000 or 2,500. The definition varies from country to country but due to the lack of epidemiological data, India hasn't arrived at one so far. Multiple reports, however, suggest that 450 of the 7,000-plus rare diseases identified globally have been reported in the country, occurring in 72 to 96 million Indians. And yet India doesn't have a national policy to diagnose and treat rare diseases, foster R&D in this field, and provide financial aid to the families of those who suffer from it, advocacy groups complain.

In 2017, the Union Ministry of Health and Family Welfare did pass the National Policy For Treatment of Rare Diseases. However, it never took off because of budgetary issues. This was followed by another draft last January but the patient advocacy groups have found it falling on many essential fronts.

In the absence of a policy, most families approach the court for intervention on humanitarian grounds. That's because a majority of these diseases have no cure, so they require lifelong treatment, the cost of which runs int
o tens of lakhs every year.

101Reporters takes you to the city of Mysuru to meet one such family whose child is suffering from Mucopolysaccharidosis Type I.


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