AgenciesIndia 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 Wednesday. 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 lower cost of treatment and benefit has been documented in literature, including galactosemia, severe food protein allergy, and homocystinuria.
Group 3 has diseases for which definitive treatment is available, but challenges are to make optimal patient selection for benefit, and high cost and lifelong therapy, covering diseases such as spinal muscular atrophy, Pompe disease, and Hunter syndrome. 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 and disorders that are amenable to other forms of therapy.
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 lower cost of treatment and benefit has been documented in literature, including galactosemia, severe food protein allergy, and homocystinuria.
Group 3 has diseases for which definitive treatment is available, but challenges are to make optimal patient selection for benefit, and high cost and lifelong therapy, covering diseases such as spinal muscular atrophy, Pompe disease, and Hunter syndrome. 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 and disorders that are amenable to other forms of therapy.
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