HC to govt: continue treating kids with rare diseases

 The state government on Friday submitted before the High Court that Rs 1 crore has been granted to the Indira Gandhi Institute of Child Health from the National Health Mission’s state funds towards treatment for children suffering from Lysosomal Storage Disorders (LSD), a rare genetic disorder.

The government counsel said that state government has written to the National Health Mission at the Centre to release Rs 34 crore towards treatment of children suffering from LSD.

A division bench comprising Chief Justice S K Mukherjee and Justice Ravi Malimath recorded the statement and directed the state government to continue the treatment and adjourned the hearing after two weeks.  

The petitioner, Lysosomal Storage Disorders Society of India, has approached the High Court seeking free treatment to persons suffering from LSD, which affects one in 8,000 live births.

 Due to the rarity of the disease, the medicines used for treatment of the disease are referred to as ‘orphan drugs’ which are very expensive. The petitioner has said that there are at least 40 identified patients, mainly children below the age of 14 years, suffering from LSD in Karnataka. The petitioner has also contended that despite allocating funds for treating LSD, it has not been utilised.