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Commence Procurement Of Medicines For Children With Rare Diseases For Whom Evaluations Are Completed: Delhi High Court To AIIMS

The Delhi High Court has directed the All India Institute of Medical Sciences (AIIMS) to commence the process of procurement of medicines for children with rare diseases, for whom evaluations have...

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Union Health Minister approves National Policy for Rare Diseases

Union Health Minister approves National Policy for Rare Diseases
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Union Health Minister approves National Policy for Rare Diseases, 2021

Union Health Minister approves National Policy for Rare Diseases, 2021
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Rare Diseases Policy 2021 focuses on indigenous research for treatment

Rare Diseases Policy 2021 focuses on indigenous research for treatment
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National policy for rare diseases notified; no financial help for diseases that need costly, lifelong treatment | India News

NEW DELHI: The National Policy for Rare Diseases 2021 (NPRD) was notified on March 31. The policy provides financial support of up to Rs 20 lakh, under Rashtriya Arogya Nidhi, for the treatment of rare diseases (RD) listed under group 1 (amenable to one time treatment- either hematopoietic stem cell transplant or organ transplant). Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only.
However, the NPRD does not provide any financial support for patients of Group 3 diseases, which have a definite treatment but is life-long and expensive. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases may vary from Rs 10 lakh to more than Rs 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight. For such patients, the government will set up a crowd-funding platform where volunteers, both corporate and individuals, can donate money for their treatment.

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