High Court tells state to allot Rs 5 cr, Centre Rs 4.4 cr to help patients with rare disorders

The first bench comprising Chief Justice AP Sahi and Justice Senthilkumar Ramamoorthy passed orders on a plea pending for the past three years seeking aid from the government to undertake the treatment of a rare disease Lysosomal Storage Disorders (LSD) that causes disorders of various dimensions that are ultimately fatal. The plea was moved by M Raja, general secretary and state coordinator for Lysosomal Storage Disorders Support Society (LSDSS). Observing that the cost component of the treatment of the disease has now become the only hurdle for both the state as well as the Centre, the bench said, “There is a perception of the state government that in view of the nature of these diseases, which cannot be permanently cured, a financial aid would only help to prolong the longevity of a patient suffering from such disease.”

“We may put on record that such a perception need not deter the government from proceeding further, as we are of the firm opinion that it is difficult to exactly predict the expiry of anything from this world,” the bench said while further noting “one should not forget that hope itself, at times, brings about miracles and therefore, it is the duty of every responsible citizen, more so, that of a welfare state, not to lose faith or hope and continue to provide whatever assistance is possible within the means available,” the bench said.

Also, noting that during the pendency of this litigation and in the preceding six months, at least, four of such patients have already lost their lives, the bench on taking the suggestions put forth by Advocate General Vijay Narayan directed the state government to form a committee headed by the Director of Medical Education to formulate and set into motion the machinery for identifying such patients and provide financial aid for their treatment.

Further, keeping in view the fact that right to survival is recognised as a part of Article 21 of the Constitution of India, the bench directed the Centre to provide Rs 4.4 crore as one-time aid for at least 11 patients based on the per-annum expenditure which is approximately Rs 40 lakhper head.