India Notifies First Policy On Rare Diseases
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India plans to create a national registry for database on rare diseases, classify known rare diseases in three groups and provide for one-time government financial assistance of up to Rs 20 lakh for certain diseases as per the country’s first National Policy for Rare Diseases notified on March 31.

The policy comes over three years after the health ministry formulated a National Policy for Treatment of Rare Diseases in July 2017 but kept it in abeyance. In the new policy, formulated after detailed stakeholder consultations, 'rare diseases' have not been defined but classified into three groups based on expert opinion.

Group 1 has disorders amenable to one-time curative treatment, including osteopetrosis and Fanconi anaemia. Group 2 has diseases requiring long-term or lifelong treatment with relatively lower cost. Group 3 has diseases for which definitive treatment is available, but challenges are to make optimal patient selection for benefit..

The policy says the government would provide financial assistance of up to Rs 20 lakh to poor patients and those covered under Ayushman Bharat for diseases under Group 1. The state governments would be asked to undertake treatment of diseases covered under Group 2, which largely include disorders managed with special dietary formulae or food for special medical purposes (FSMP) and disorders that are amenable to other forms of therapy.

For diseases classified under Group 3, which require life-long expensive treatments, the government would create a digital platform to bring together Centres for Excellence, patients undergoing treatment and corporate donors or prospective voluntary individuals who could help fund treatment.

"The Centre needs to work out mechanism to fund all three categories," said Ashok Gupta, in-charge of Rare Diseases Centre. For Group 3 also the government should work out a 60:40 model where 60% could be funded by charitable organisations and 40% by the government. Some parents of children suffering from rare diseases said they felt that the government has given up on them.

"There are no timelines on when this digital platform would be functional," said Archana Panda, parent of a child suffering from spinal muscular atrophy. Sir Ganga Ram Hospital, which sees the highest number of rare diseases patients in India, does not even figure in the list of Centres of Excellence.

Source:
https://economictimes.indiatimes.com/industry/healthcare/biotech/healthcare/india-notifies-first-policy-on-rare-diseases/articleshow/81811354.cms?
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