On 8th June, the Kerala High Court in its bench consisting of Justice Bechu Kurian Thomas while hearing a writ petition filed for seeking government’s assistance in procuring one of the costliest drugs for the treatment of a five month old boy suffering from Spinal Muscular Atrophy sought for the government’s response in an affidavit.
Facts of the case:
The writ petition was filed by the father of a five month old son, blighted by a rare disease called ‘Spinal Muscular Atrophy’. This rare disease has no treatment other than by administering a single dose of the costliest drug in the world by the name ‘Onasemnogene’ costing Rs.16 to 18 crores, for one dose. The prayer in the writ petition is to direct the respondent State to import the said life-saving drug and to provide necessary medical treatment to the petitioner's son.
Prayer of the petitioner:
The petitioner prayed for directing the respondent State to import the said life-saving drug and to provide necessary medical treatment to the petitioner's son, who is on the ventilation in the Government Medical College Hospital, Kozhikode.
Argument of the respondent:
The learned Government Pleader opposed from issuing any directions of the nature sought for, without placing the appropriate pleadings in that behalf.
Order of the Court:
On hearing the said petition the court was of the view that this was a fit case to grab the attention of the principal secretary of the 1st and 2nd respondent.
The bench also stated that India being a welfare state various aspects are required to be borne in mind including the efficacy of the drug, its staggering cost, the treatment protocols, the possibility of crowd-funding that can be raised for funding purchase of the medicine, etc.
In the light of the above a direction was sought to the respondents 1 and 2 to file a counter-affidavit in detail stating its response in the case.
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