Why in the news?
Recently, the Delhi High Court directed that the Centre establish a National Fund for Rare Diseases and allocate Rs 974 crore for 2024-25 and 2025-26. This was to be approved and transferred in 30 days. It also said “treatment for all eligible… patients, as per an AIIMS report dated July 21, who are before the court in these batches of petitions shall commence in 45 days as per the NRDC (National Rare Diseases Committee) recommendations.”
Rare Disease
The World Health Organisation (WHO) has defined rare diseases as a debilitating, lifelong condition that affects 1 or fewer people in 1,000. Around 6% to 8% of the population is estimated to have a rare disease, meaning 8.4 crore to 10 crore Indians are living with these conditions for which treatments either do not exist or therapies are extremely expensive.
Some common rare diseases are Haemophilia, Pompe disease, Thalassemia, Sickle-cell Anaemia, and Gaucher’s disease
Points to be noted
The Delhi High Court said that the National Rare Diseases Committee (NRDC), which was constituted on May 15, 2023, shall continue to function for a further period of five years with the ICMR director general as chairperson of the committee.
The Court also directed the government to expand the existing number of centres of excellence (COEs) “considering patient density”. As of 2023, there were 11 COEs across the country.
Currently, 63 rare diseases are included under the National Policy for Rare Diseases, which was recommended by the Central Technical Committee for Rare Diseases (CTCRD).
Therapies are available for less than 5% of rare diseases, leading to less than 1 in 10 patients receiving disease-specific care. Existing treatments are often very expensive.
Rare Diseases in India
In India, rare diseases are categorised into three groups based on the nature and complexity of available treatment options.
→ Group 1 includes diseases that can be treated with a one-time curative procedure.
→ Group 2 diseases require long-term or lifelong treatment which are relatively less costly and have shown documented benefits, but patients need regular check-ups.
→ Group 3 diseases are those for which effective treatments are available, but they are expensive and must often continue lifelong. There are challenges in selecting the right beneficiaries for these treatments.
