Justice Pratibha Singh Takes Decisive Action on Rare Diseases:

• In the case of MASTER ARNESH SHAW vs UNION OF INDIA & ANR, while hearing a bunch of petitions by children with rare diseases seeking subsidized treatment due to high costs, J. Pratibha Singh’s orders lead to the creation of India’s new rare disease policy. Here are the highlights from her order.

• In March 2021, Justice Pratibha Singh acknowledged the right to health as a fundamental right and expressed concern over the delay in finalizing the Draft National Policy for Rare Diseases introduced by the Union government in 2020.

• There was an emergency, leading to Justice Pratibha Singh directing the Ministry of Health to provide a timeline for finalizing the policy. For Duchenne Muscular Dystrophy (DMD) petitioners, crowdfunding options were encouraged.

•J. Pratibha Singh relied on comments from an expert committee formed by her to look into specific issues for rare disease treatment. J. Pratibha Singh was particularly concerned about the impracticability of funding expensive international treatments for rare diseases and thus, focused on making treatments accessible through development of drugs in India. This resulted in creation of the National Consortium for Research and Development on therapeutics for Rare Diseases to expedite drug development efforts in India.

• Justice Pratibha Singh reviewed underutilized budgets for Rare Diseases, leading to the creation of a dedicated 'Rare Diseases Fund' for efficient utilization of funds in treatment and research.

• Specific directives included forming a Rare Diseases Committee at AIIMS, linking a digital crowdfunding platform to the Rare Diseases Fund, and establishing a streamlined mechanism for timely case examinations and treatment recommendations.

• On May 15, 2023, Justice Pratibha Singh directed the formation of a five-member committee to ensure effective implementation of the National Policy for Rare Diseases, 2021.

• Addressing Coordination Challenges: Justice Pratibha Singh, acknowledging the lack of centralized coordination among Centers for Excellence, emphasized the urgency of resolving this issue. The absence of such coordination has led to delays in providing essential therapies, predominantly affecting children with rare diseases. The committee aims to rectify this by ensuring a more streamlined approach.

🌟 Together Towards a Healthier Future: Let's raise awareness, support, and ensure that no one is left behind in the journey towards a healthier and more inclusive society.

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