Delhi High Court directs AIIMS to treat poor boy suffering from rare disease

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Aggrieved by the conduct of All India Institute of Medical Science (AIIMS) for denying treatment to his seven-year-old son suffering from life-threatening Gaucher disease, a man has knocked the Delhi high court door seeking free treatment for his kid.

The boy was required enzyme replacement once in a month and the expenses comes above Rs 6 lakh.

Gaucher is a rare 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.

AIIMS denied treatment to the boy, son of a rickshaw puller, on the ground that the drug used for the treatment is very expensive.

On Thursday, the Delhi high court said, "A patient cannot be denied treatment due to financial constraint and the State is bound to find a source to generate funds for the poor patients."

Pulling up the Delhi government for expressing its inability to come forward and provide financial help, Justice Manmohan said, "You have to find a way to provide medical aid to poor patients. Funds have to be created. There cannot be a vacuum."

The court accepted the funds generated by the Delhi High Court Bar Association and directed the AIIMS director to provide treatment to the boy till the time the court settles the man's plea.

Appearing for the lawyers' body, former additional solicitor general A S Chandhiok, who is also ex-president of the bar, told the court that the lawyers have contributed Rs7.80 lakh and deposited it in the petitioner's account which can be transferred to AIIMS account.

Justice Manmohan directed immediate transfer of the amount to AIIMS director's account, and asked him to continue treatment till the court decides.

The court has decided to hear the matter and pass a detailed order on the plea and fixed March 25 as the next date for hearing.

Earlier, the court had said that the cost of treatment should not be an impediment as far as the life of a child is concerned and India being a welfare state, it is the constitutional obligation of the state machinery to do whatever is necessary to preserve a human life in a time-bound manner. The court directed the Central and Delhi governments to decide if a policy can be framed to provide treatment to terminally-ill patients.

The principal secretary for health in Delhi government told the court that "there is no policy under which the government can provide financial help and there are no resources to generate funds".

To this, Justice Manmohan said, "Since there is no government, you are the sole authority. Frame a policy and get it approved by the Lieutenant Governor."

Meanwhile, the petitioner's lawyer Ashok Agarwal referred to several apex court judgments and submitted that due to financial constraints a patient cannot be denied treatment.

According to the father of the ailing child, he has already lost four children to gaucher's disease and this child has survived till this age due to regular treatment.

It is difficult for him to meet the huge expenses occurred towards the treatment for life long, he said.

Advocate Shyel Trehan, who was appointed as amicus curiae by the court, 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.

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