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28th February is observed as “Rare Disease Day” across over 90 countries worldwide including India, to raise awareness of rare diseases and improve access to their treatment.
Rare diseases are those which affect very small numbers or a very small percentage of the population of a country. In India, about 5% to 8% i.e. between 70 million to 100 million people have been estimated to suffer from rare diseases like Osteogenesis Imperfecta, haemophilia, Duchenne muscular dystrophy, and Pompe disease.
Unfortunately, the majority of such diseases are incurable. Those which can be cured require treatments which can run into hundreds of thousands or even crores of rupees, including organ transplants, gene therapy and in most cases assisted healthcare. Some of these rare diseases can also take many years to cure completely.
Most times, rare diseases are not easily identified. What makes it even more difficult to treat these is that Indian healthcare facilities lack basic readiness to treat such illnesses. Hence, one needs to seek overseas treatment for such diseases, with huge financial implications for the patient’s family.
This situation on making drugs available for rare diseases has been well tackled by the United States, as they have passed the Orphan Drugs Act, which offers pharma companies a slew of incentives to develop medicines for such illnesses. This has allowed over 500 drugs to be developed and launched in the market. But the condition is totally different in India. Here, we do not have such facilities and hence people suffering from rare diseases have to undergo treatment overseas or import these highly expensive drugs from countries like the US.
Hence the hurdles that remain are that effective treatment is not available for most of the diseases. Only 5% of rare diseases have approved treatments available and only 1 out of 10 patients can undergo curable treatment. And where available, the medication is usually hugely expensive.
According to the paper released by the Expert Committee on Rare Diseases by the Ministry of Health & Family Welfare New Delhi, Indian pharmaceutical companies do not produce suitable drugs for rare diseases because very small populations suffer from these diseases, leading to a small market for such drugs.
In order to reduce such costs in the Indian market, the government should take policy decisions to perhaps incentivise and support pharma companies. Additionally, given that the number of sufferers in India is not exactly small, it should take steps to ensure that the medicines are priced affordably. This can provide much-needed relief to Indian sufferers of rare diseases and their families.

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