Treat patients with rare diseases free of cost: High Court

The High Court on Monday directed the State government to provide free and uninterrupted treatment to patients of Lysosomal Storage Disorders (LSD) at the Indira Gandhi Institute of Child Health, Bengaluru, and bear the entire cost of the same.

Hearing a petition by Lysosomal Storage Disorders Support Society (LSDSS) on Monday, a division bench of Acting Chief Justice S K Mukherjee and Justice Ram Mohan Reddy also ordered that a notice be issued to the government.

The society had stated that LSD was a rare genetic disorder which affected one in 8,000 live births. The prognosis of such disorders witnesses the progressive accumulation of partially degraded compounds in vital organs which results in multi-organ malfunctions, adversely affecting their quality of life and eventually leading to death. The treatment for the disorder is available in the form of enzymes which significantly alter the progression of such disease, reverse most of the symptoms and allow the patient to lead a normal life. Due to the rarity of the disease, the treatment of the disease is referred as ‘orphan drugs’ and is very expensive. There are at least 40 identified patients, mainly children below the age of 14 years, who are suffering from the LSD in Karnataka. The petitioner contended that funds allocated for treating the disorder had not been utilised. The bench then granted interim relief by ordering the government to provide free treatment to children suffering from the LSD. It also directed the government to file objections at next hearing.