Release Rs 5.95 crore for children with rare diseases: HC to state

In a statement to the court, the IGICH Director said Rs 5.95 crore is required for treating the remaining 25 children for the next four months.

Published: 25th February 2020 06:54 AM  |   Last Updated: 25th February 2020 06:54 AM   |  A+A-

By Express News Service

BENGALURU: Noting that it would be failing in its duties if it does not interfere when state and central governments have locked horns over funds to be spent on treatment of children suffering from a rare disease, ‘Lysosomal Storage Disorder’ (LSD), the Karnataka High Court directed the state government to release Rs 5.95 crore to treat 25 such children at Indira Gandhi Institute of Child Health in the city.

In an interim order passed on Monday on public interest litigation filed by Lysosomal Storage Disorder Society of India, a division bench of Chief Justice Abhay Shreeniwas Oka and Justice Hemant Chandangoudar said the state government has to release the amount in four monthly installments till June.
The bench cautioned that both state and central government will be responsible if any untoward incident happens due to failure in releasing the funds.

In a statement to the court, the IGICH Director said Rs 5.95 crore is required for treating the remaining 25 children for the next four months. The bench asked the state government to submit a representation to the union government to release the funds for the treatment of children or to use the amount from the funds allotted for the health sector.

D902 crore unspent
Meanwhile, the data submitted by the state indicated that `902 crore has remained unspent out of a total allocation of Rs 2,401 crore provided for the health sector for 2018-19. The government stated that it cannot reallocate the funds without the approval from the Ministry of Health and Family Welfare.

Interest is not sufficient
The bench pointed out that a corpus of Rs 17 crore was provided by the state to IGICH to treat LSD patients. But it is allowed to use only the interest amount for procuring drugs. As it requires Rs 40 lakh per year per child weighing about 10 kg, the cost of treatment increases by Rs 2 to 3 lakh for every extra one kg weight.

The bench also issued notices to the two companies, which supply drugs for LSDs, to get their response on supplying medicines at concessional prices or free


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