The Petitioner is an eighteen-month-old girl suffering from a rare Gaucher disease. The father of the little girl filed the petition on her behalf in order to seek funds for her medical treatment as well as directions for the treatment which has to be given to her. The father of the Petitioner approached various government authorities for the same, however, none had been fruitful.
Central Government’s Policy on Gaucher Disease
The Government of India, in the year 2018, had come up with a National Policy for Treatment of Rare Diseases. However, the same had been scrapped down due to objections by certain State Governments. A new draft policy for treatment of rare diseases was prepared by the Government and has been released on the 13th of January 2020 but the same has not been brought into effect. On account of the same, there is no other policy in place at present which deals with persons with rare diseases and the directions for their treatment.
Submissions by the Petitioner
It was pleaded by the counsel for the petitioner that Gaucher should be considered as a rare disease as it has been treated as an ‘orphan disease’ in the United States and in the European Union. It was submitted by the Petitioner that the monthly cost of the treatment comes up to 3.5 lacs, which the family of the Petitioner cannot afford due to economic constraints. It was further submitted by the counsel that taking into consideration that the policy for the rare disease is yet to be finalised and brought into effect, AIIMS shall start the treatment of the Petitioner without charging any fees.
Delhi High Court’s Observation
Taking into consideration the circumstances of the present case, the Honourable High Court ordered to commence the treatment of the Petitioner immediately and to communicate the same to the Medical Superintendent, AIIMS as well as the Director, AIIMS. The Court further ordered to send the copy of the order to the Standing Counsel for AIIMS as well, along with Mr. Amit Mahajan, Standing Counsel for the Union of India and to the Ministry of Health and Family Welfare. The court also directed the Union of India to file an affidavit as to the current policy of the government on rare diseases before the next day of the hearing.
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