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In a recent judgment, pronounced by Justice Pratibha M. Singh, the Delhi High Court directed All India Institution of Medical Sciences (AIIMS) to provide free treatment to an 18-year-old girl, suffering from a rare disease called ‘Gaucher’. The girl, through her father, filled a petition in the honorable court seeking financial assistance and claimed that the cost of her treatment is approximately Rs. 3.5 lakh, per month.
In the absence of any law governing health regulations for patients with rare diseases in India, the court deemed it necessary to interfere and also asked the Government of India to inform the court about Government’s policy on rare diseases via an affidavit, before 17th April 2020.
The petitioner pleaded that the abovementioned disease is considered to be an ‘orphan disease’ in the United States of America and the European Union. The court also took note of the ‘National Policy for Treatment of Rare Diseases’ which was prepared by the Centre in 2018. However, after acknowledging the objections made by certain states, the policy had to be scraped off and the center again released a draft policy in January 2020. The matter has been listed on 17th April 2020, where the court will dictate directions concerning the expenditure incurred on medical treatment.
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