Hyderabad: Along with the Apex court, several High Courts too have made observations filled with compassion, regarding the diagnosis and treatment of rare diseases. The court rulings emphasize the need for government intervention to tackle the diseases.
Drawing curtains to the prolonged wait, the Central government has come forth with a national policy on rare diseases. A disease that afflicts two or more persons in a 5000 population is considered a rare disease. Defined variously in different parts of the world, there are 7000 to 8000 rare diseases in India and around 7 crore persons are afflicted by them, say the experts. More than 80 per cent of these diseases are caused by genetic defects. Less than 5 percent of these diseases have treatment worth mentioning.
Proper medication is not available for the rare diseases that make the patients suffer for years at a stretch. The available medicines are too costly to be afforded by the common people. Corrective measures were planned with a national policy way back in 2017, but the government plans have finally come to fructify after a long wait.
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Union Minister for Health, Dr Harsh Vardhan has stated that the National Policy for Rare Diseases 2021 has been approved. While making the announcement, he went on to add that the policy aims to lower the high cost of treatment for rare diseases, with an increased focus on indigenous research and local production of medicines. "Beneficiaries financial assistance under the scheme will not be limited to BPL [Below Poverty Line] families, but the benefit will be extended to about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana," the health ministry said in a statement.
Except in Karnataka, nowhere else in India is there any scheme that is beneficial to citizens suffering from rare diseases. Under the new policy, the Center is assuring that it would extend upto Rs 20 lakh as assistance under the Rashtriya Arogya Nidhi. However, it is felt that there is still more left to be done.
