JUDGEMENT
P.B.SURESH KUMAR,J. -
(1.)There cannot be any doubt on the principle that where there is a right, there is a remedy, ubi jus ibi remedium,
but the facts of this case unfortunately disclose that there is a
gap in reality between right and remedy, especially when it
comes to the enforcement of rights against State. The attempt
of this Court in this matter, therefore, is to bridge the said gap.
(2.)Coming to the facts, the son of the petitioner Imran Mohammed, a toddler was suffering from a rare disease
'Spinal Muscular Atrophy' (SMA). It was alleged by the
petitioner that the life of his son cannot be saved otherwise
than by administering the drug "Onasemnogene Abeparvovec
(Zolgensma)" which costs approximately Rs.18.00 crores. The
case of the petitioner was that since he is unable to secure the
drug, the State is obliged to secure and administer the same to
his son to save his life.
(3.)An organisation of the parents of children suffering from SMA called 'Cure SMA Foundation of India' has
got themselves impleaded as seventeenth respondent in the
writ petition. The affidavit filed by them in this matter reveals
that SMA is an extremely severe and rare genetically inherited
degenerative neuro muscular disease; that SMA results in
progressive loss of motor nerve cells in the brain stem and
spinal cord that controls essential muscle activity and that
those who are affected by SMA at a very early stage of their
life may not survive and though persons who are affected by
SMA at a later stage would survive, they need supportive care.
It is also revealed from the said affidavit that there are about
100 children in the State who are suffering from SMA; that though there are life saving and life altering drugs including
Zolgensma for the treatment of SMA, they are prohibitively
expensive and no facilities whatsoever have been provided by
the Central and State Governments for treatment of SMA,
especially for those who cannot afford the expenses for the
treatment.
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