ISSUE
1.
The issue that arises for consideration in the present petition is
whether a minor child born to parents belonging to economically weaker
section of the society suffering from a chronic and rare disease, gaucher, is
entitled to free medical treatment costing about rupees six lakhs per month
especially when the treatment is known, prognosis is good and there is every
likelihood of petitioner leading a normal life.
FACTS
2.
The facts of the present case are that the petitioner is a young boy
aged about seven years and is represented through his next friend, his father,
Mr.Mohd. Sirajuddin. The petitioner suffers from a rare genetic disease
called Gaucher Disease, which is Lysosomal Storage Disorder, wherein the
body cannot process fat resulting in accumulation of fat around vital organs
of the body. If this disease is left untreated, the petitioner is unlikely to
survive. Petitioner is the fourth and only surviving child of his parents; his
other three siblings have already succumbed to the same disease.
3.
A treatment by the name of Enzyme Replacement Therapy is
available for this disease. It is expected that patients receiving this treatment
have a high degree of normalcy.
The treatment, however, is monthly,
lifelong and exorbitant. Petitioner's father, who is a rickshaw puller by
profession cannot afford the same.
4.
Currently the drugs required to treat this condition are manufactured
by three pharmaceutical companies globally, Sanofi, Shire and Pfizer. Of
these, only one company, Sanofi sells its gaucher's drugs in India. The cost
of the treatment is estimated at approximately rupees six-seven lakhs every
W.P.(C) 7279/2013
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