Delhi High Court: Pratibha M. Singh, J. addressed a petition wherein an 18 month old girl was suffering a rare disease called ‘Gaucher’ and her family could not bear with the expenses of the treatment.
The petition was filed by the father of the an 18 month old girl suffering from a rare disease wherein he sought funds for her treatment.
Government of India had come out with a National Policy for Treatment of Rare Diseases in the year 2018 which was scrapped and draft policy document for rare disease was released on 13-01-2020. However same has not come into effect yet.
Petitioner’s Counsel submitted that the monthly cost of the treatment amounts to Rs 3.5 lakhs and as the expense for the treatment is quite steep the same cannot be afforded by the petitioner’s family.
Court held that considering the age of the child, it is deemed appropriate to direct the respondent 3 — AIIMS to start the treatment of the petitioner without charging anything from the petitioner.
Further the Bench asked the copy of the order to be communicated to Medical Superintendent AIIMS as well as Director, AIIMS with request to commence the treatment of petitioner immediately also to the Ministry of Health and Family Welfare.
Union of India is also directed to file an affidavit with regard to the Government’s current policy on rare diseases.
Petition has been listed for 17-04-2020. [Alishba Khan v. Union of India, 2020 SCC OnLine Del 485, decided on 23-03-2020]