In a first, government gives Rs 1 crore for treating rare disorders

Published: 23rd August 2016 04:53 AM  |   Last Updated: 23rd August 2016 04:53 AM   |  A+A-

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BENGALURU: The state government on Friday told the High Court that it has provided `1 crore to Indira Gandhi Institute of Child Health (IGICH) to start an enzyme replacement therapy for 26 children suffering from Lysosomal storage disorders (LSD). The government’s decision comes after the High Court passed a judgment in this regard last June. This is a historic decision because no law in the country mandates life-long treatment for rare diseases and no state has ever funded such a treatment.

Director of Karnataka’s National Health Mission Rathan Kelkar has also written to the Centre to release `34 crore for the treatment.

According to World Health Organization, seven crore Indians suffer from rare diseases. LSDs are a group of 50-odd rare genetic disorders that result from defects in lysosomal function.

Lysosomes are enzyme sacs in cells that break down complex molecules and pass the fragments to other parts of the cell for recycling, the failure of which causes it to be accumulated in the cell. LSDs include diseases like Gaucher, Mucopolysaccharidosis (MPS), Fabry and Pompe. Enzyme replacement therapy (ERT) replaces the enzyme which is insufficient in the child.

Dr Sanjeeva G N, assistant professor, paediatrics, IGICH, has been associated with diagnosis and treatment of these children for years. He said, “It is like a ‘rich man’s diabetes’. For instance, it takes `43 lakh to treat a child who weighs 10kg for a year. No Indian manufacturer produces these ‘orphan drugs’ (to treat rare diseases) as it isn’t commercially viable. In the US or the UK, it is publicly funded.”

The Karnataka High Court judgment sets a legal precedence for other states. The petitioner, Lysosomal Storage Disorders Support Society (LSDSS), is headquartered in Delhi and headed by a group of parents of LSD patients. The judgment, however, didn’t come easy. Last June, the state had first asked IGICH to treat these children for free. The institute, however, did not have sufficient funds for ERT.

Prasanna Kumar B Shirol, founder member, Organization for Rare Diseases India, said, “We had 45 patients, of whom only 26 were treatable, as in medicine was available. Three of them have died. Whenever patients approached their states (for funds), they were asked if any state has provided funds. Now, we can cite the Karnataka judgment.”

Shirol has a 17-year-old girl who was diagnosed with LSD at the age of two. She is getting treatment under a charitable enzyme programme of American biotech company Genzyme, now taken over by Sanofi. The company provides free therapy to 100 LSD patients. Shirol and his wife decided of aborting their second child after pre-natal diagnosis conformed LSD.

Sanjeeva said, “Children need therapy once in two weeks and this is life-long. Except Genzyme, no other biotech firm offers medicine because it cannot be marketed.”

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