Rare disease patients and advocacy groups appeal to PM Modi for sustainable funding

Rare disease patients and advocacy groups appeal to PM Modi for sustainable funding. The National Policy for Rare Diseases (NPRD) provides one-time treatment support of up to ₹50 lakh, but patients have exhausted this funding and are facing catastrophic financial burdens. The Delhi High Court has directed the establishment of a National Fund for Rare Diseases (NFRD) with an allocation of ₹974 crore for FY 2024-2025 and 2025-2026.

The Indian healthcare system has made significant strides in recent years, but it still faces challenges when it comes to addressing the unique needs of patients with rare diseases. With the National Policy for Rare Diseases (NPRD) providing one-time treatment support of up to ₹50 lakh per patient, many have benefited from this initiative. However, as patients exhaust this funding, they are left with catastrophic financial burdens [1].

The Delhi High Court has recognized the urgency of this issue and has directed the establishment of a National Fund for Rare Diseases (NFRD) with an allocation of ₹974 crore for FY 2024-2025 and 2025-2026 [2]. This fund aims to provide sustainable financial support to patients with rare diseases, ensuring they have access to the necessary treatments and care.

The NPRD, launched in March 2021, has identified 63 rare diseases and categorized them into three groups based on their treatment requirements [1]. Group 1 includes disorders that are amenable to one-time curative treatments, while Group 2 consists of diseases requiring long-term or lifelong treatment with relatively lower costs. Group 3 includes diseases for which definitive treatments are available but face challenges such as high costs and the need for optimal patient selection [1].

To receive financial assistance for the treatment of rare diseases, patients can approach any of the 12 identified Centres of Excellence (CoEs) across the country [1]. These premier government tertiary hospitals have facilities for diagnosis, prevention, and treatment of rare diseases. Since the launch of the policy, a total of 1,118 patients have benefited from this initiative [1].

The establishment of the NFRD is a crucial step towards ensuring sustainable financial support for patients with rare diseases. With the current funding model providing only one-time support, patients are often left with significant financial burdens. The NFRD aims to address this issue by providing ongoing financial support to patients, enabling them to access the necessary treatments and care.

In conclusion, the urgent appeal for sustainable funding for rare disease patients in India is a critical issue that needs to be addressed. The establishment of the NFRD with a significant allocation is a positive step towards ensuring that patients have access to the necessary treatments and care. As we continue to make progress in the field of rare disease research and treatment, it is essential that we provide sustainable financial support to patients to ensure they can benefit from these advancements.

References:
[1] Ministry of Health & Family Welfare. (2024, August 9). Press Release - 41. Retrieved from https://www.mohfw.gov.in/?q=pressrelease-41
[2] The Hindu. (2024, July 26). Delhi High Court directs Centre to establish National Fund for Rare Diseases. Retrieved from https://www.thehindu.com/news/national/delhi-high-court-directs-centre-to-establish-national-fund-for-rare-diseases/article65798792.ece