Saturday 20 December, 2014

Provide free treatment to Gaucher disease patient: HC

Published On: Thu, Apr 17th, 2014 | Indian Health | By BioNews

Saying that “just because someone is poor, the government cannot allow him to die”, the Delhi High Court Thursday directed the state government to discharge its “constitutional obligation” and provide free treatment to a Gaucher disease patient.

The court ordered that enzyme replacement therapy be provided to a rickshaw puller’s seven-year-old son suffering from the life threatening Gaucher disease, a genetic disorder.

Enzyme replacement therapy (ERT) is a medical treatment to replace an enzyme that is deficient or absent in patients.

Justice Manmohan remarking that “health is not a luxury” and “should not be the sole possession of a privileged few” asked Delhi government to discharge its constitutional obligation and provide the child with ERT at the All India Institute of Medical Sciences (AIIMS) here free of cost as and when he requires it.

The court was hearing a plea filed by the father of Mohd. Ahmed, who has been suffering from Gaucher disease Type-I, and was denied treatment by AIIMS after his parents were unable to pay Rs.4.8 lakh per month.

The father has already lost four children to Gaucher’s disease that 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.

The court said the government is bound to ensure that poor and vulnerable sections of society have access to treatment for rare and chronic diseases, like Gaucher especially “when the prognosis is good and there is a likelihood of the patient leading a normal life”.

It further opined that by virtue of article 21 of the Constitution, the state is under a legal obligation to ensure patients have access to life-saving drugs.

The court also said “government cannot cite financial crunch as a reason not to fulfil its obligation” to ensure access of medicines or to adopt a plan of action to treat rare diseases.

“In the opinion of this court, no government can wriggle out of its core obligation of ensuring the right of access to health facilities for the vulnerable and marginalized section of society, like the petitioner by stating that it cannot afford to provide treatment for rare and chronic diseases,” Justice Manmohan said.

Passing the judgment, the court also expressed displeasure that unfortunately the central government does not have any policy measure in place to address rare diseases, particularly those of a chronic nature.

“All the central and state schemes provide for a one-time grant for life-saving procedures and do not contemplate continuous financial assistance for a chronic disease such as Gaucher, which involves lifelong expenditure. There are even no incentives in place for Indian manufacturers to develop local alternatives to orphan drugs (those used for rare and chronic diseases),” the court stated.

Justice Manmohan further said the court is of the opinion that neither any promising orphan drug will be developed nor the prohibitive cost of “orphan drugs” will see a reduction unless changes are made in the applicable laws to reduce the cost of developing such drugs.

It added that every person has a fundamental right to quality healthcare — that is affordable, accessible and compassionate. “Undoubtedly, availability of finance with the government is a relevant factor. Courts cannot be unmindful of resources and finances. No court can direct that entire budget of a country should be spent on health and medical aid. After all competing claims like education and defence cannot be ignored.

“At the same time, no government can say that it will not treat patients with chronic and rare diseases due to financial constraint. It would be as absurd as saying that the government will provide free treatment to poor patients only for stomach upset and not for cancer/HIV/or those who suffer head injuries in an accident,” said the court.

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