The Delhi High Court recently directed All India Institute of Medical Sciences (AIIMS) to start treatment for an 18-month old girl, suffering from a rare disease called 'Gaucher', free of charge. The Director of AIIMS has been requested to commence the treatment immediately.
Justice Pratibha M Singh took note of the fact that a Government policy for treatment of persons with rare diseases is not yet in place and directed the Central government to file an affidavit regarding its plans for such a policy before next date of hearing, which is April 17.
The petition had been moved before the Court by the girl's father to seek funds for his daughter's treatment, which he informed came up to a monthly cost of approximately Rs. 3.5 lakhs. It had also been prayed that the Court pass directions for her to be given treatment, since repeated representations before various governmental authorities by the family did not yield any result. Giving due consideration to the age of the patient coupled with the fact that a policy is yet to be finalised, the request was allowed. With regard to the expenses towards the treatment, the Court said it would pass further orders after the Centre came on record.
The operative part of the order reads-
"The expense for this treatment is quite steep which the Petitioner's family cannot afford. Considering the age of the child and given that the policy for rare diseases is yet to be finalised by the government, it is deemed appropriate to direct Respondent No. 3 -AIIMS to start the treatment of the Petitioner without charging anything from the Petitioner. Further directions in respect of the expenses towards the said treatment would be passed after the Union of India enters appearance in the matter."
The order also records that, in 2018, the Centre did come out with a 'National Policy for Treatment of Rare Diseases'. However, this policy had to be scrapped on account of objections made by certain state governments. Thereafter, another draft policy on rare diseases was readied, and the same has been released on January 13, 2020. The same has not yet come into effect.
"It is pleaded that 'Gaucher' has been treated as an 'orphan disease' in the US and in the European Union", further recorded Justice Singh.