HC asks govt to set up National Fund for Rare Diseases
This story was originally published at 19:49 IST on 7 October 2024
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NEW DELHI – The Delhi High Court has asked the government to establish a National Fund for Rare Diseases, for which a sum of INR 9.74 billion will be allotted for financial years 2024-25 (Apr-Mar) and FY26. Similarly, the same amount, if not higher, will be allocated for the next two financial years of FY27 and FY28, the court said.
It said that while it was conscious that the fund might not be fully sufficient for the number of patients, the government's data reveals not all patients are yet approaching centres of excellence for treatment. It expressed confidence that once the fund was created, over the next few years, efforts would be made to reduce the price of drugs and make them more accessible. Crowdfunding and corporate social responsibility funding would also bring in additional funds for tackling rare diseases, the court said.
The high court was hearing a bunch of petitions involving 106 patients suffering from rare diseases. These cases have been heard by the high court from time to time since 2020 and various directions have been issued for enabling treatment and making medicines available to the petitioners.
On May 15, 2023, the high court had directed the creation and functioning of the National Rare Diseases' Committee to implement the National Policy for Rare Diseases, 2021. In the current order, the court said the committee would continue to function for a further period of five years.
The committee's mandate includes monitoring and providing guidance on strategies for implementation of research and development policy in the country, continuing identification and recognition of rare diseases, ensuring that procurement of drugs for treatment of rare diseases was done at a reasonable and affordable price, among other things.
The high court said that requisite notifications for granting customs, goods and services tax waivers and exemptions under Income Tax Act, 1961 in respect of imports of rare diseases medicines, would be processed and issued within 30 days. It said that pharmaceutical companies would ensure the adequate availability of therapies and medicines for rare diseases in India, whether through manufacturing or imports. The companies currently importing rare disease therapies will submit a detailed plan to the Ministry of Health and Family Welfare and the committee within 90 days to establish local manufacturing or distribution facilities in India for therapies and medicines relating to rare diseases, the court said. End
Reported by Surya Tripathi
Edited by Avishek Dutta
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