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In the case of Alishba Khan v. Union of India & Ors., 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. Hence, she directed the Central government to file an affidavit regarding its plans for such a policy before next date of hearing, which is 17th April. The Diretor of All India Institute of Medical Sciences has been requested to commence the treatment immediately.
The facts of the case are:
(i) The petition was filed 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.
(ii) Requested the Court to pass directions for her to be given treatment, since repeated representations before various governmental authorities by the family did not yield any result.
The request was allowed after duely considering the age of the patient and also, the fact that a policy is yet to be finalised.
The operative part of the order says as follows:
"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 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."
With regard to the expenses towards the treatment, the Court said it would pass further orders after the Centre came on record.
The order notes that the Centre did come out with a 'National Policy for Treatment of Rare Diseases' in 2018. 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 13th January 2020, but it has not come into effect, yet.
In conclusion, the Delhi High Court directed AIIMS to start treatment for an 18-month old girl suffering from a rare disease called 'Gaucher', free of charge.
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