In the first week of October, the Delhi High Court heard several petitions together that were filed by patients afflicted with a rare disease or their parents. The judgement pronounced by Justice Pratibha Singh offers much hope to us. Here is a summary of key points (emphasis in italics are the aHUS India Foundation’s additions):
- The Govt of India must reconsider the cap of Rs. 50 lakhs for the treatment of rare disease patients under the National Policy for Rare Disease (NPRD). This cap is inadequate for some rare diseases.
- Donations for rare diseases must be added in Schedule VII of the Companies Act to enable Corporate Social Responsibility (CSR) contribution by companies, including Public Sector Undertakings.
- The Govt of India must establish a National Fund for Rare Diseases (NFRD) for which a sum of ₹974 crores must be allocated for the financial years 2024-25 and 2025-26. Either the same or a higher amount must be allocated in the next two financial years.
- The National Rare Diseases’ Cell consisting of one or more Nodal Officers in the health ministry will administer the NFRD and release funds under NPRD as directed by the National Rare Diseases’ Committee (NRDC).
- If the fund is not utilised in a year, it will not lapse (which means it would carry forward to subsequent years)
- A portal to be setup within 3 months that will have a patient registry and information on fund utilisation, nearest centres of excelence etc.
- A crowdfunding platform must be setup in 2 weeks, details of which should be publicised on regular and social media.
This ruling is very far-reaching and impactful if the directions are followed in letter and spirit by the parties concerned. It is important that those directed by the court to do these things do so in a time bound manner. Rare disease patients should not continue to be left to fend for themselves. Health is a basic human right and must not be looked at by the government or anyone as a favour being done on its citizens.
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