Central govt. has to chip in for treatment of rare diseases: State

Plea for enzyme therapy free of charge for children

The State government on Monday informed the Kerala High Court that it alone could not raise funds for treatment of Lysosomal Storage Disorders (LSD) afflicted children in the State free of charge and a financial assistance from the Centre was essential as a huge amount was required for the treatment of the rare disease.

The submission was made in an affidavit filed in response to a public interest litigation seeking a directive to provide enzyme replacement therapy free of charge for children suffering from LSD and implement the national policy for treatment of rare diseases in the State.

The petitioner said the national policy had been kept in abeyance by the Centre. The petition has been filed by the Lysosomal Storage Disorders Support Society, Kerala chapter.

Lysosomal storage diseases are a group of about 50 rare inherited metabolic disorders that result from defects in lysosomal function. Lysosomes break down unwanted matter by enzymes, highly specialised proteins essential for survival.

The government pointed out that the supply of drugs for enzyme replacement therapy had a huge financial implication on the exchequer. Therefore, it would become impossible for the State government to set part necessary budgetary provision to purchase essential drugs for all government hospitals. At present, the cost of treatment for a child for one year came to ₹1 crore.

There were about 200 children in the State who required treatment for the rare disease condition. Besides, there were only limited players in the manufacture and sale of the drugs for the condition.

In fact, ₹50 lakh had already been set apart by the Kerala Security Mission for the most deserving patients. The Union government could be directed to allocate necessary funds for treating the rare diseases, the government pleaded.