Karnataka High Court Directs Centre, State To Ensure Implementation Of National Rare Diseases Policy

A division bench of Acting Chief Justice Alok Aradhe and Justice J M Khazi while disposing of a petition filed by the Lysosomal Storage Disorders Support Society said,

"In view of the fact that a Policy has already been framed for treatment of the patients suffering from rare diseases, it is directed to the Central Government and State Government to ensure implementation of the aforesaid policy."

The petitioners had approached the court raising an issue with regard to rights of children suffering from debilitating and potential rare disease called Lysosomal Storage Disorders (LSDs), which is a rare genetic disease. They sought a direction to the respondents to jointly and severally take all necessary steps to provide members of the petitioner or any other patient continuous uninterrupted treatment free of cost at Indira Gandhi Institute of Child Health, in Bangalore.

A direction was also sought to make necessary amendments to existing policies such as Rashtriya Bal Swasthya Karyakram (RBSK) Scheme and other such health care benefits being run by the Government to facilitate treatment of rare diseases including LSDs. Appointment of a committee to enquire into the issue pertaining to non-allocation of funds to the institute towards treatment of rare diseases.

Additional Solicitor General of India, M B Nargund and Additional Government Advocate, Vijay Kumar Patil submitted that the Government of India as well as the Government of Karnataka have not treated this litigation as an adversarial one and have ensured that treatment is given to the patients suffering from the rare disease. Every possible effort is being made to extend the treatment to the patients who are suffering from the rare disease.

The court was informed about the National Policy for Rare Diseases, 2021 and said that the aforesaid Policy shall be implemented in letter and spirit. It is also pointed out that in the budget for the period from April 2022 to March 2023, a provision for Rs.10 Crores has been made and the aforesaid amount shall be released to the institute for the treatment of the patients on demand by the institute.

Court findings:

The bench noted that in compliance of the interim orders passed by this court from time to time, the amounts have been released in favour of the institute. It is also not in dispute that the institute has sufficient funds to treat the patient till December, 2022. A provision for a sum of Rs.10 Crores, has been made by the State Government for the period from April 2022 to March 2023 and the aforesaid amount shall be released for the treatment of the patients on demand being made by the institute.

Further it said,

"During the pendency of the petition, the Government of India has framed a comprehensive policy which is known as National Policy for Rare Diseases, 2021. The said policy has been framed on the basis of recommendations made by an Expert Committee constituted by Government of India in consultation with the State Governments at the draft stage of formulation of the Policy. The aforesaid policy takes note of the Indian scenario and also takes into account the experiences from other countries alongside the need to balance competing priorities."

It added, "Eight Centres of Excellence and Nidhaan Kendras have been notified all across the country by the Central Government under the Scheme to facilitate diagnosis prevention and treatment of rare diseases. The policy also makes a provision for the addition of more centres of excellence for regional outreach."

It then observed, "Thus, the aforesaid Policy governs the need of the treatment to the patients suffering from rare diseases. The aforesaid policy has been framed by the Central Government on the basis of recommendation and by the Committee of Experts. It is not the case of the petitioner that the aforesaid policy is either capricious or is malafide. It is also not the case of the petitioner that treatment to the patients of LSD is not being administered."

Following which it opined,

"The Government of India as well as the State Government has categorically stated that they have not treated this petition as an adversarial litigation and has assured this court that all steps will be taken to implement the Policy, which has been framed by the Central Government in Letter and Spirit."

It then held, "For the aforementioned reasons, the prayer sought for amendment to the existing policy such as RBSK scheme and to enquire into non-allocation of funds does not survive for consideration."

Case Title: Lysosomal Storage Disorders Support Society v. State of Karnataka & Others

Case No: W.P 19061 of 2015

Citation: 2022 LiveLaw (Kar) 278

Date of Order: 18th July 2022

Appearance: Advocate Varsha Manoj for petitioner; AGA Vijay Kumar Patil for R1 and R2; Advocate N K Ramesh for R3; ASG M B Nargund a/w Advocate Kumar M N for R4; Advocate M G Nanjappa For R5