Karnataka HC Directs Centre, State To Release Funds For Children With Rare Genetic Disease Of LSD

A division bench of Chief Justice Abhay Oka and Justice Suraj Govindaraj said "Suffice it to say that the families of affected children are not in position to bear minimum cost of Rs 40 lakh per year. Therefore, failure of State and Central Government to release the amount for treating the affected children will be in violation of Fundamental Right conferred under Article 21, of the children of Right To Life."

Advocate M N Kumar appearing for the Central government had informed the court that directions have been issued to eight institutions mentioned in the National Policy for Rare diseases which included Indira Gandhi Institute, to open bank account and at the instance of Ministry of Corporate Affairs, amounts from CSR funds will be transferred to the said account."

The bench in its order said "We make it clear that if any amount is transferred to the institute for treating the patients at the instance of Government of India from CSR funds. The Government of Indian will be entitled to necessary adjustments."

The bench gave the direction while hearing a petition filed by LYSOSOMAL STORAGE DISORDERS SOCIETY OF INDIA and others. It is a rare genetic disease which is stated to affect 1 in 8000 live births. In the state of Karnataka treatment is provided to the victims of said diseases in Indira Gandhi Institute of child health. It is an autonomous institution created by the state government.

The prognosis of LSDs witnesses a progressive accumulation of partially degraded compounds in vital organs which results in multi-organ malfunctions, adversely affecting their quality of life and eventually leading to failure to thrive. Broadly speaking, for a child whose weight is 10 kgs, the cost of treatment per year is approximately forty lakh rupees. As the weight increases, the price of treatment increases by approximately two/three lakh rupees per kilogram. As of today, the third respondent is required to deal with only 45 cases of the children affected with LSDs.

During the first four months of this financial year the amount required for treatment is approximately Rs 563.1 lakhs. A provision will have to be made for 10 more cases (either new or those patients whose sponsorships are expiring) and the total amount required in the first four months is approx. 629.8 lakhs. This cost is based on the negotiated cost of medicines. Liquid amount available with the institute from the payment made by the state government is Rs 250 lakhs. A shortfall will be off Rs 380 lakhs for the period of first four months. A period of first four months will expire on July 31, 2021

Earlier under the scheme of the Central government, 40 percent was borne by the Central Government and 60 percent was borne by the state government. However, from the year 2015, aid from the central government has been stopped and the entire burden has to be borne by the State Government.

The court has now posted the matter for further hearing on June 18, when both governments will have to file compliance reports. The court has allowed the institute to move the vacation court if the amount is not deposited by the governments.

Last year, the Kerala High Court had passed a series of orders to ensure funds for children suffering from LSD,