Rare Diseases

Challenges, impact, and suffering of women in India.

- Snehashish Roy

Rare diseases have recently caught worldwide attention. Still, developing countries such as India lack proper awareness, diagnosis, and drug development strategies. The definition of this medical condition varies in different territories.

In the United States, a disease that affects not more than 200,000 people is considered rare. The same disease, if it affected more than 5 in 10,000 people in Europe, will be far from being rare. Japan, on the other hand, considers a medical condition rare when it affects fewer than 50,000 people.

It has not been made possible to determine the exact number of rare diseases but with the advancements of technology, the latest diseases are continuously being discovered. According to a non-profit organisation, 80 percent of the disease is genetic in origin. Majorly, there are three types of patient groups - first, who need one-time treatment, second, who need longtime or lifelong treatment with relatively affordable drugs, and third, who need longtime or lifelong treatment with astronomically expensive drugs.

The size of the Indian population of over one billion can undeniably translate into a huge disease burden for diseases that are rarest of rare. Initiatives are being taken to reduce the socio-economic burden by accelerating the diagnosis of rare diseases in the country. There are more than 7,500 rare diseases discovered across the globe. Around 500 of them have the US's Food and Drug Administration (FDA)-approved medicines. According to the National Policy for Treatment of Rare Diseases, India has recorded 450 rare diseases and they impact more than 90 million people in the country.

Struggles And Challenges