Children with rare diseases: Kerala High Court appeals to advocates for contributing to the corpus fund

Former Judges of the Kerala High Court to join the Central Government

Case: Lysosomal Storage Disorders Support society vs. Union of India and Ors.

Case no.: W.A. No. 2151 of 2017 and W.P. (C) No. 28250 of 2017

Judgment by: S. Manikumar, C.J. and Shaji P. Chaly, J. 

Brief facts

Lysosomal Storage Disorders Society supports the cause of children afflicted with a rare genetic disorder known as Lysosomal Storage Disorders (LSDs). Under National Policy for treatment of rare diseases, Ministry of health and family welfare, Government of India created a National and State Level Corpus in which the State and the Central government had to contribute to the treatment of rare diseases.

Accordingly, from 2017 a sum of Rs.50 lakhs was deposited every year by the state in the corpus fund. The state government is duly fulfilling its responsibilities but on the side of Central Government, no heed was paid. It did not make any contribution in the National corpus fund. According to the provisions relating to the National and State corpus fund, the Government of India had to set up a corpus fund with the minimum amount of Rs.100 crore in the ratio of 60:40. According to the Government of Kerala in spite of the availability of sufficient funds in the financial year 2016-17 and 2017-18, there were financial constraints for providing medical assistance to those who require Enzyme Replacement Therapy due to which some children expired.

Further, it also said that medical assistance cannot be concentrated on one particular disease but is open for other critical diseases such as cancer, kidney transplant, etc. as well. The entire carry forward income cannot be spent only for the treatment of Enzyme Replacement Therapy.

To this Central Government replied that because of certain difficulties in implementation of Policy, Government of India issued Gazette notification on 18/12/2018 informing the general public that this policy has been kept in abeyance. Government of Kerala had created corpus at the state level and upheld the scheme but the same has not been done by the Central government. Union of India did not discharge its duty.

Key features

Article 253 of Indian Constitutionsays that legislation for giving effect to international agreements Notwithstanding anything in the foregoing provisions of this Chapter, Parliament has power to make any law for the whole or any part of the territory of India for implementing any treaty, agreement or convention with any other country or countries or any decision made at any international conference, association or other body.

According to Article 24 of the Convention on the Rights of the Child

1. States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.

2. States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures:

a. To diminish infant and child mortality;

b. To ensure the provision of necessary medical assistance and health care to all children with an emphasis on the development of primary health care;

c. To combat disease and malnutrition, including within the framework of primary health care, though, inter alia, the application of readily available technology and through the provision of adequate nutritious foods and clean drinking-water, taking into consideration the dangers and risks of environmental pollution;

d. To ensure appropriate pre-natal and post-natal health care for mothers;

e. To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition, the advantages of breastfeeding, hygiene and environmental sanitation and the prevention of accidents;

f. To develop preventive health care, guidance for parents and family planning education and services.

3. States Parties shall take all effective and appropriate measures with a view to abolishing traditional practices prejudicial to the health of children.

4. States Parties undertake to promote and encourage international co-operation to achieve progressively the full realization of the right recognized in the present article. In this regard, particular account shall be taken of the needs of developing countries. 


The bench of Kerala High Court observed and directed that-

  • Firstly, the court sought an explanation from the State government as to income though sufficiently available could not be spent on the medical assistance and in the interest of the beneficiaries.
  • The Union of India should deposit a sum of Rs. 1.5 Crores in the State Corpus which is due as per the then existing National Policy, within 15 days from the receipt of the copy of this order.
  • Union of India should attempt to evolve a new policy for the same purpose and thereby follow the trite law by abiding by the resolution no. 44/25 passed by the United Nation General Assembly to which India is a part of.
  • Further, the court said that the rights and liberties of the children are to be protected in terms of Article 24 of the Convention on the Rights of the Child and Articles 50 and 253 of the Constitution of India.
  • At last, the bench said that contributing for a social cause and the protection of the rights and liberties of the children is a noble profession and it is known that many designated senior advocates contribute their knowledge and money for charitable purposes, Court said that the Association can also contribute to the fund for providing treatment to the needy children and directed to forward this order copy to the Kerala High Court Advocates Association, Lady Lawyers Association, Senior Advocates Association and Kerala High Court Staff Association. As we all know, “Charity begins at home.”

Edited by Vartika Gajendra Singh

Approved & Published – Sakshi Raje