Taking note of the plight of children suffering from rare genetic diseases, the High Court of Kerala has directed the Central Government to deposit an amount of Rs 1.5 crores within 15 days in the State-level corpus fund which is maintained for the treatment of such patients.
This amount represents the 60% share which the Union Government is supposed to contribute to the Corpus as per the National Policy for the Treatment of Rare Diseases. The Central Government and State Government have to contribute in the ratio 60:40 to the State level corpus.
The Court also made an appeal to the legal fraternity to make contributions for helping the treatment of children with rare diseases.
"Profession of Advocate is noble and it is known that many designated Senior Advocates contribute their knowledge and money for charitable purposes. Therefore, we are of the view that Associations can also contribute to the fund for providing treatment to the needy children. Registry is directed to forward a copy of this order to the Kerala High Court Advocates Association, Lady Lawyers Association, Senior Advocates Association and the Kerala High Court Staff Associations", observed a division bench of Chief Justices S Manikumar and Justice Shaji P Chaly.
The court was considering a petition filed by Lysosomal Storage Disorders Society which supports the cause of children afflicted with a rare genetic disorder known as Lysosomal Storage Disorders (LSDs). LSDs affect multiple organs and cause progressive physical or mental deterioration over time. This rare disease affects 1 in 5000 births as a group.
The treatment options for LSDs undergo a variety of therapies. According to the petitioner, the approximate annual cost for the treatment would be Rs.1,72,22,400/-. As a result, many children with LSDs are succumbing to the disorder due to lack of proper therapeutic care and medical support. The petitioner society collected the details of 15 children diagnosed to be suffering from treatable LSDs, who needs Government support for treatment.
The petitioner said that though the Government of Kerala has announced the 'Thalolam project', with the intention to provide free treatment to the children below 18 years, LSDs have not been included among the diseases under this project.
The petitioner also prayed to direct the State and the Union Governments to fulfill their obligation by ensuring Enzyme Replacement Therapy for the children in the State suffering from Lysosomal Storage Disease.
In this regard, the Court sought an explanation from the State Government as to why the income though available could not be spent for treatment of those who require Enzyme Replacement Therapy.
"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," observed the Court.