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The Delhi High Court directed the All India Institute of Medical Sciences to initiate treatment for an 18- month old girl, who is suffering from a rare disease called “Gaucher”, for free. The court requested the director of AIIMS to start the treatment as soon as possible.
Justice Pratibha M Singh notes the fact that there is no Government Policy in place for treatment of persons with rare diseases. Due to this, the court directed the Central Government to file an affidavit which should contain its plans for such policy before the next hearing, which will be on 17th April, 2020.
The petition was filed by the girl’s father to seek funds for the treatment of his daughter. The monthly cost which came up was Rs.3.5 lakhs for the treatment. The father also requested the court to pass necessary directions for his daughter to be given necessary treatment as the family did not get adequate aid and support from any governmental authorities. The request was allowed by the court, considering the age of the patient and absence of a policy in this matter. The court stated that in regard to the expenses, the court will pass orders once the centre file the affidavit on the next hearing.
The court observed the following: “ the expense for his treatment is quite steep which the Petitioner’s family cannot afford. Considering the age of the patient and given the fact that there is no policy in place regarding the treatment of these rare diseases, it is deemed appropriate to direct AIIMS to start the treatment without charging the petitioner”.
The court observed that the centre in 2018 formulated “national policy for treatment of rare diseases”, however this policy had to be scrapped on account of objections raised by several state governments. Subsequently another policy was drafted however has not yet come into effect.
Thus the court directed the centre to file an affidavit containing the progress they have made in this regard.
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