Rare diseases are conditions that affect a small number of people, however, they can have a huge impact on an individual’s life since there aren’t many resources and treatments that are available for these diseases. A report in Business Line says that as of October 2021, the ICMR’s rare diseases registry lists a total of 4,001 rare diseases in India.

To provide the patients with the required treatment and medicine, the government introduced the National Policy for Rare Diseases, 2021 (NPRD’21). According to the NPRD’21, rare diseases are divided into three categories; disorders amenable to one-time curative treatment, diseases requiring long-term/lifelong treatment having a relatively lower cost of treatment and diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very at a high cost and lifelong therapy.

The Ministry of Health and Family Welfare earlier launched made-in-India drugs for 14 diseases and this helped to reduce the cost. But these drugs only cater to four conditions; Tyrosinemia Type 1, Gaucher’s Disease, Wilson’s Disease and seizures related to Dravet/Lennox Gastaut Syndrome, says a Business Line report. A significant challenge lies in the government’s struggle to address the monopolistic control pharmaceutical companies hold over patents for rare disease medications. In numerous cases, these companies have prioritised patenting and monopolising their drugs over making them accessible to the Indian population.

However, the government recently announced that will procure 120 patented medicines and 17 of these are for rare diseases. This is a positive sign of the need to address rare diseases.

In an earlier interview with Times Now, Dr Ramaiah Muthyala, President of the Indian Organisation of Rare Diseases said, “We are not doing enough in the field of rare diseases.”

Dr Muthyala adds that in India, 5% of the population suffers from rare diseases, none of which have cures, only treatments. “Public health data on rare diseases is lacking. When I asked public health officials about this, their response was often dismissive. They tell me it is a very small number. However, even a small percentage represents a significant number of people in a country as large as India.’

Sharing about the manufacturing of medicines for rare diseases, Dr Muthyala says that despite being known as the pharmacy bowl of the world, India does not provide medicines to our own people, instead, they are exported. “This has led to the common misconception that medicines for rare diseases are beyond one’s reach, that’s how expensive they are perceived to be. In reality, only 1% are costly. Many can be made in India at a reduced cost, but until those in authority see this as a pressing issue, nothing will change.”

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