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Rare Diseases on the Radar: Indian Government’s Bold Steps

NextEdge Admin

12 Mar 2024

3 min 11 sec

India demonstrates a strong commitment to affordable rare disease diagnosis and treatment, exemplified by initiatives such as the ICMR-NIRRCH Genetic Research Centre. The government’s emphasis on providing state-of-the-art genetic testing and counseling services, coupled with the Delhi High Court’s order exempting custom duties on rare disease medicines, underscores a dedicated effort to make healthcare accessible and affordable for affected individuals.

The ICMR-NIRRCH Genetic Research Centre has become the first government center in Maharashtra to provide genetic testing and counseling services. This marks a crucial milestone in addressing the challenges posed by rare diseases. The center is set to accept referrals from prominent civic bodies, government medical colleges, and hospitals in the regions surrounding Mumbai. This move is significant as rare diseases in India, chronic and life-threatening conditions affecting 7.2 crore to 9.6 crore individuals, have long been a neglected aspect of public health.

Rare diseases often have a genetic basis, and children are particularly susceptible. Statistics reveal that nearly 35% of deaths resulting from genetic disorders in children occur within the first year of life.

The GRC’s efforts align with the broader goal of addressing this problem by providing high-quality and free testing and counseling services. The center holds approval under the Pre-Conception and Pre-Natal Diagnostic Techniques (PCPNDT) Act for these services, ensuring compliance with ethical and legal standards.

Currently, the GRC serves around 570 families annually, addressing genetic conditions during infancy, childhood, adolescence, and reproductive difficulties faced by couples. This comprehensive approach reflects the commitment to tackling rare diseases at various stages of life.

Additionally, a recent order by the Delhi High Court further supports the cause by clarifying that custom duties and charges will not be levied on medicines, drugs, and therapies for rare diseases. The court emphasizes the need for expeditious clearance of these essential medications to ensure timely access for patients in need, reinforcing the government’s dedication to addressing rare diseases in Maharashtra and beyond.