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The Delhi High Court has directed Employee’s State Insurance Corporation (ESIC) to grant interim treatment to three children: two from Bengaluru suffering from Gaucher disease, rejecting its argument that the therapy is too expensive.
Gaucher disease is a type of Lysosomal Storage Disorder (LSD). The parents of the children appealed to the government to extend similar aid to all patients of LSDs in the country.
Ashok Agarwal, senior advocate, Supreme Court and national convener, All India Parents Association, who filed a petition in the Court on behalf of families of patients of rare diseases seeking government aid for treatment, said that ESI has the obligation not only under the Employees' State Insurance Act but also Article 21 of the Constitution that guarantees every person the right to life with dignity. The Supreme Court has laid down that it is an obligation of the state under Article 21 of the constitution to preserve the life of every person.
“The court’s view is that if the cure of a disease is available and the patient is not in a position to afford it, it becomes the duty of the state to bear the treatment cost. Health is a state subject but no state has so far enacted any legislation for the Right to Health. The subject of health should be brought in the concurrent list of the Constitution. The Right to Health must be made a fundamental right under Chapter 3 of the Constitution and the central government should enact a central law on the right to public health,” he added.
Three minor ESIC beneficiaries: Baby Nisha from Tamil Nadu and Baby Nisarga and Master Lalit Kumar from Karnataka had asked ESIC for treatment of Gaucher disease, but were denied the same citing high cost of therapy. Their cause was championed by the senior advocate Ashok Agarwal who filed a petition on their behalf with the Delhi High Court. The Court directed ESIC to fulfil its ‘constitutional obligation’ of providing treatment to these children without consideration to the cost.
Dr. Meenakshi Bhat, consultant, Centre for Human Genetics said that the three minor patients diagnosed with Gaucher disease are all receiving medical care under her supervision.
“Till now, we have been trying hard to keep them healthy despite Gaucher being a progressive disorder. This includes supportive care such as correcting poor growth, anaemia, bleeding, eye and bone problems and for one patient surgical spleen removal was also done. Permanent and lasting treatment of the disorder is enzyme replacement therapy (ERT) enabling them to lead near normal lives,” she said.
Manjit Singh, president, LSDSS, appealed to the government to make special budgetary provisions for treatment of rare disorders. Therefore we welcome Delhi High Court judgment. It is a big relief for patients that the Court has given favourable orders to treat rare diseases. The judgments is a milestone for the state and central governments in formulating a special health policy for children suffering from rare diseases.
In June 2015, the Karnataka High Court too directed the state government to provide free and uninterrupted treatment to LSD patients at the Indira Gandhi Institute of Child Health, Bengaluru. The treatment of these rare diseases is very expensive and unaffordable to most. There are at least 40 identified patients, mainly children under 14 years, who are suffering from LSDs in Karnataka.
India currently has about 300 patients diagnosed with LSDs which can be treated through ERT. Due to the high cost of therapy for rare diseases like Pompe, MPS-1, Fabry and Gaucher, the economically backward patients find it difficult to lead a productive life.
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