Coming to the rescue of children suffering from Lysosomal Storage Disorders (LSDs), the High Court of Karnataka on Monday directed the State government to release ₹5.95 crore to treat 25 children at Indira Gandhi Institute of Child Health (IGICH), Bengaluru, for the next four months. The government has to release the amount in four equal monthly instalments till June.
A Division Bench comprising Chief Justice Abhay Shreeniwas Oka and Justice Hemant Chandangoudar passed the interim order while observing that the court would be failing in its duties if it did not interfere in this case when the State and the Union governments have locked horns over the manner of sharing huge amounts required for the treatment LSD patients.
Of the total 45 children diagnosed with LSDs, 13 are being treated under Charitable Access Programme, seven were being supported by the Employees State Insurance, and a total of ₹5.95 core was required for treating 25 children for the next four months, the Bench noticed from the statement made by IGICH Director.
Right to health
Citing the apex court’s judgments declaring that the right to health is an inalienable component of fundamental right to life under the Constitution, the Bench cautioned that both the State and Union governments would be responsible if any untoward incident happens with the children due to failure to release the amount.
The Bench said that the State government gave representation to the Central government to release substantial money for treatment or permit it to use the amount for this purpose from the allocation made for health sector.
As its earlier policy of providing 60% of the amount required for treatment of rare diseases was kept in abeyance, the Centre said that it cannot release the amount till further orders or formulation of new policy for treating rare diseases, while indicating that the State government could use funds from the allocation made to the health sector.
About ₹902 crore remained unspent with the State government from the total allocation of ₹2,401 made for the health sector for 2018-19, data indicated. On its part, the State government said it cannot change or re-appropriate allocated funds without approval from the Ministry of Health and Family Welfare.
Insufficent funds
The Bench also noticed that ₹17 crore corpus fund was provided to the IGICH by the government to treat LSD patients but only the interest amount could be utilised for procuring drugs and the interest amount was not sufficient to provide treatment at regular interval.
The medicine required depends on weight of the patient and requires about ₹40 lakh per year per child weighing about 10 kg, and the cost of treatment increases by about ₹2 to ₹3 lakh for every extra kilo, the Bench noted.
Meanwhile, the Bench ordered issue of notice to two companies which supply medicine for LSDs, to appeal to them to explore the possibility of providing medicine at concessional rates or for free in some cases. The order was passed during the hearing of a PIL petition filed by Lysosomal Storage Disorder Society of India, Bengaluru.