Can’t let a poor boy die before our eyes, says High Court

1Just because the Centre, State and AIIMS say they are short of funds

Just because someone is short of funds, the State cannot allow him to die, the Delhi High Court said on Friday. The Court was moved by the plea of a rickshaw puller for free treatment of his seven-year-old son who suffers from a rare genetic disorder even as the Centre, the Delhi Government and the All-India Institute of Medical Sciences cited absence of funds and schemes to support such patients.

“It is not an incurable disease. I know the boy can be cured. I cannot allow him to die before my eyes. Just because he is short of funds, can the State allow him to die?” said Justice Manmohan.

The case of the minor, who suffers from Gaucher’s disease, was taken up by advocate and social activist Ashok Agarwal, who moved the High Court seeking direction for free treatment of the disorder which requires life-long enzyme replacement therapy at the cost of Rs.7 lakh every month. In this disease, fatty substances accumulates in various organs like the brain, spleen and white blood cells, and the patient is susceptible to infections.

The boy was given a dose of drugs free of cost at Medanta on February 21. The Delhi High Court Bar Association also collected funds for him.

“The State has to safeguard the right to life. Something has to be done. If none of us takes any action, the boy will die in front of our eyes. What is the use of having Article 21 on the statute? I will be forced to use the long arm of law and order that he be treated at AIIMS at the expense of Central Government,” the Bench said on Friday, disturbed that the country does not have any alternative drugs or funds to support poor patients requiring life-long treatment.

The court was informed by the Centre and the Delhi Governments that financial assistance schemes in place provide for a “one-time grant” of Rs.5 lakh only.

Amicus curiae Shyel Trehan suggested that since the only problem in the case was the cost of the treatment, “in such a situation, Indian companies can devise an alternative, apply for licence and provide cheaper drugs”.

Ms. Trehan also brought to the court’s notice the fact

that Corporate Social Responsibility (CSR) Rules were re-notified as recently as Thursday and under the new notification, aid towards infant mortality, maternal health and combating diseases have been deleted and only promotion of preventive health has been provided for.

Earlier, the court had suggested that companies can be asked to provide for healthcare of such patients under CSR.

“They have deleted it?” the court expressed surprise and asked: “Why has the schedule been replaced?”

It asked the Ministry of Corporate Affairs to inform it as to why rules have been changed.

Ms. Trehan also told the court that under the rules concerned, CSR cannot be undertaken in normal course of business, as pharmaceutical companies cannot donate drugs since it is their business, even as it would be much easier for them to do so and much more beneficial for the needy.

She also said that at present only three companies – Sanofi, Pfizer and Shire – are making drugs for Gaucher’s and of the three, only Sanofi is catering to India.

Meanwhile, the Union Ministry of Health and Family Welfare and the Delhi Government apprised the High Court of the meeting held between them to discuss the instant case and the issues arising out of it in pursuance of the court’s February 12 order.

“Examining the matter from public health point of view, existing guidelines of available schemes and possibility of further repercussions, it has not been found possible to devise a viable policy for financial assistance on recurring mode on a long-term basis for entire life for patients suffering from LSDs [Lysosomal Storage Disorder/ Gaucher’s disease],” it said, adding that although there was no authentic data on patients suffering from Gaucher’s disease, it is estimated that there number would be about 500 in the country.

The Centre also submitted that the treatment for Gaucher’s disease is at the stage of clinical trial, but the statement was rebutted by the amicus and also the Bench.

The court noted that in the meeting the specific case was not considered and it directed the Delhi Government to take a decision with regard to his case in one week.

The All-India Institute of Medical Sciences was also asked to find out the chances of survival of the boy if he was given treatment


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