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As per the Court's order, directions in respect of the expenses would be passed after the Central Government enters appearance in the matter.
In the absence of any policy for rare diseases, the Delhi High Court has directed the All India Institute of Medical Sciences to start the treatment of an 18-month-old girl suffering from a rare disease called ‘Gaucher’. (Alishba Khan vs UOI)
As per the Court's order, no charges for the treatment would be levied on the child and further directions in respect of the expenses would be passed after the Central Government enters appearance in the matter.
The order was passed by a Single Judge Bench of Justice Pathiba M Singh.
The 18-month-old girl who was suffering from Gaucher had moved the High Court through her father.
She had filed the petition seeking funds for her treatment as well as directions for treatment as repeated representations to various governmental authorities had not yeilded results.
The Court was informed that the Government of India had come out with a National Policy for Treatment of Rare Diseases. However, due to objections by certain State governments, the same was reportedly scrapped and a draft policy document for rare diseases was released on January 13, 2020.
Since the draft Policy is yet come into effect, at present there is no policy in place at for persons with rare diseases and their treatment.
It was further submitted that the monthly cost of treatment was approximately Rs 3.5 lakhs, which the child's family could not afford.
In view of these circumstances the Court ordered,
The Court also directed the Centre to file an affidavit with respect to the current policy of the Government on rare diseases.
The matter would be heard next on April 17.
The Petitioner was represented by Advocates Rahul Malhotra, Manas Tripathi.
Delhi Government was represented by Additional Standing Counsel Anuj Aggarwal.
Read the Order: