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Rare Disease Patients Appeal to Health Minister for Sustained Funding and Policy Intervention

NextEdge Admin

18 Jun 2024

2 min 51 sec

Rare Disease India Foundation and rare disease patients have urged the new Union Health Minister, JP Nadda, to address critical gaps in policy implementation to support patients suffering from chronic rare genetic disorders like lysosomal storage disorders (LSDs). They emphasized the urgent need for sustained funding and timely access to life-saving treatments, particularly for Group 3a conditions.

Advocacy groups highlighted the importance of Centres of Excellence (CoEs) in expediting treatment processes. They lamented that despite being designated as Group 3(a) conditions under the National Policy for Rare Diseases 2021, diseases such as Pompe disease, Fabry disease, MPS I and II do not receive equal priority at CoEs. This discrepancy delays treatment, endangering patients' lives.

A major concern voiced was the inadequacy of current funding provisions, capped at a one-time allocation of Rs. 50 lakh per patient. This limitation has resulted in many patients being unable to continue life-saving therapies once the initial funding is exhausted. The groups appealed for uninterrupted, sustainable funding for all notified ultra-rare diseases with approved therapies.

Efficient fund utilization at CoEs was another pressing issue highlighted. Despite allocations from the Ministry of Health & Family Welfare, many CoEs have failed to fully utilize these funds, thereby restricting access to crucial therapies. Advocates stressed the need for enhanced accountability and efficiency in fund management to ensure optimal patient care.

Furthermore, they underscored the necessity of including all notified rare disease conditions equally in the NPRD 2021, advocating for equitable treatment prioritization across the board.

While appreciating government support, they urged the new administration to prioritize rare diseases in its 100-day action plan. This, they argued, would demonstrate the government's commitment to addressing these critical health issues and catalyze necessary actions and resource allocations.