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Gaucher diseaseObserving that cost of treatment should not be an impediment to save the life of a child suffering from a rare disease, the Delhi High Court Thursday directed the central and city governments to decide if a policy can be framed to provide treatment to terminally-ill patients.

Justice Manmohan was hearing a plea about a rickshaw puller’s seven-year-old son who is suffering from the life-threatening Gaucher’s disease, a genetic disorder. Posting the matter for Feb 28, the court asked the health ministries of the centre and Delhi to hold a meeting within a week to see if a policy can be devised on the issue. “In the present case, the right to life of a small child must be given utmost priority irrespective of the rarity of the disease, especially when a known treatment is available for the same,” the court said. “Cost of treatment should not be an impediment as far as the life of a child is concerned.

Being a welfare state, it is the constitutional obligation of the state machinery to do whatever is necessary to preserve human life in a time bound manner.” The child, Mohd. Ahmed, has been suffering from Gaucher disease Type-I, and was denied free treatment by the AIIMS after his parents were unable to pay Rs.4.8 lakh per month. The father of the ailing child has already lost four children to Gaucher’s disease.

Gaucher is an inherited disorder that affects many organs and tissues. Fat accumulates in cells and organs and the disease is characterised by bruising, fatigue, anaemia, low blood platelets and enlargement of the liver and spleen. During the hearing, amicus curiae advocate Shyel Trehan told the court that Gaucher disease from which Ahmed suffers was a rare chronic disease known worldwide as “Orphan disease”.

She said that according to research, only about 200 cases of this disease have been diagnosed in India so far and the monthly expenditure on treatment was over Rs.6 lakh. Trehan said that in the US, there was a specific legislation, “Orphan Drug Act”, which provides incentives to pharmaceutical companies to undertake research on the rare disease. She said there was no such Act or even a policy in India. Advocate Ashok Aggarwal, appearing for the child’s father, said the central and state governments’ position was a violation of the child’s human and fundamental rights to life and a failure on their part in performing their constitutional duty of providing free treatment.


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