On 27 January, the Kerala High Court citing the plight of children suffering from rare genetic diseases has directed the Central Government to deposit an amount of Rs 1.5 crores within 15 days in the State-level corpus fund maintained for the treatment of patients. As per reports of the National Policy for the Treatment of Rare Diseases, the amount serves around 60% share of the Union Government’s contribution to the Corpus.
The divisional bench of Chief Justice S Manikumar and Justice Shaji P Chaly while hearing a petition filed by Lysosomal Storage Disorders Society stated that “Many designated Senior Advocates contribute their knowledge and money for charitable purposes. Therefore, we are of the view that Associations can also contribute the fund for providing treatment to the needy children.”
Lysosomal Storage Disorders Society supports the cause of children afflicted with a rare genetic disorder known as Lysosomal Storage Disorders (LSDs), which affect multiple organs and cause progressive physical or mental deterioration over time. It is one of the rarest diseases that affects around 1 in 5000 births as a group.
The petitioner observed that the approximate annual cost for the treatment of LSDs which involve a variety of therapies would range around Rs 1,72,22,400. He further added that due to the lack of monetary relief, proper therapeutic care as well as medical support, many children succumb to the disorder.
The petitioner submitted that though the Government of Kerala has announced the ‘Thalolam project,’ intending to provide free medical treatment to the children below 18 years, however, LSDs have not been included among the diseases under this project. He further sought the HC to direct the State and the Union Governments to ensure Enzyme Replacement Therapy for the children in the State suffering from the Disease.
Considering all the above contentions, the bench of Kerala High Court observed 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.” The court further directed the Registry to forward a copy of this order to the Advocates Association of Kerala HC, Lady Lawyers Association, Senior Advocates Association, and the Kerala High Court Staff Associations.