Rare diseases These are conditions that affect very few people, however, they can have a huge impact on a person’s life as there are not many resources and treatments available for these diseases. A Business Line report states that as of October 2021, ICMR’s rare diseases registry lists a total of 4,001 rare diseases in India.

To make available the required treatment and medicines to patients, the government introduced the National Policy for Rare Diseases, 2021 (NPRD’21). As per NPRD’21, rare diseases are divided into three categories; disorders amenable to one-time curative treatment, diseases requiring long-term/lifelong treatment with relatively low cost and diseases for which definitive treatment is available but optimal patient selection for benefit is challenging, costly and lifelong treatment is very high.

The Ministry of Health and Family Welfare had previously launched made-in-India medicines for 14 diseases and this helped reduce costs. But these medicines are effective only for four conditions; seizures related to tyrosinemia type 1, Gaucher disease, Wilson’s disease and Dravet/Lennox Gastaut syndrome, reports Business Line. A key challenge lies in the struggle for the government to address the monopoly control of pharmaceutical companies on patents for rare disease medicines. In many cases, these companies have prioritised patents and monopolies over making their medicines accessible to the Indian population.

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

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

Dr Muthyala says 5% of the population in India suffers from rare diseases, none of which have a cure, only treatments. “There is a lack of public health data on rare diseases. When I asked public health officials about this, their response was often dismissive. They told me it was a very small number. However, even a small percentage represents a significant number of people in a large country like India.”

Talking 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 make medicines available to its people but exports them. “This has led to the common misconception that medicines for rare diseases are beyond anyone’s reach, hence they are considered so expensive. In reality, only 1% are expensive. Many medicines can be manufactured in India at a lower cost, but unless those in power consider this a serious issue, nothing will change.”

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