Provide urgent treatment to patients with rare disease: High Court

The first bench comprising Chief Justice AP Sahi and Justice Senthilkumar Ramamoorthy offered the direction on a plea moved by Lysosomal Storage Disorders Support Society of India after accounting for the submission by the State government that a Government Order was issued on July 27 allocating Rs 5 crore as the State’s initial contribution. Also, a committee of six persons has been constituted to ensure the release of funds for individual cases.

During the hearing, Additional Solicitor General R Sankara Narayanan submitted that the central government has preferred to file Special Leave Petition (SLP) regarding the directions of the deposit to be made by it. The bench then asked the ASG to bring to the notice of the Supreme Court the GO issued by the State government in case the SLP was entertained.

“The central government is also expected to cooperate in this endeavour of providing treatment not only to the rare diseases but also to the rarest of rare diseases. In the instant case, an application has been filed by the petitioner entailing the list of 11 patients, who urgently need the treatment for which a prayer has been made that the State government be directed to take appropriate steps for administering such treatment,” the bench added, while posting the plea for further hearing to August 25.