The central legal point established in the judgment is the need for the government to implement the National Policy for Rare Diseases, 2021, in letter and spirit to ensure the treatment of patients suffering from rare diseases.

ORDER

1. This petition, which has been filed pro bono publico, raises 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. The petitioner seeks a writ of mandamus 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 (hereinafter referred to as 'the Institute' for short) in Bangalore. The petitioner further seeks a direction to the respondents 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. The petitioner also seeks appointment of a committee to enquire into the issue pertaining to non-allocation of funds to the institute towards treatment of rare diseases.

2. The petitioner claims to be a registered PanIndia non-profit organization, which aims to create awareness about LSDs, amongst the medical practitioners as well as public in general. In State of Karnataka, the treatment to patients of LSDs is provided in the Institute, which is an autonomous institute established by the State Government. Cost of treatment of a patient suffering from LSDs is expensive and most of the families of the patients suffering from such disease are not able to afford the cost of medical treatment, which is approximately Rs.40 Lakhs for a child weighing about 10 Kgs. The petitioner, therefore, approached the State Government seeking treatment of the patients suffering from LSDs and made a request to provide for financial assistance. Thereafter, this petition was filed seeking the reliefs as stated supra.

3. A division bench of this court by an order dated 23.04.2020 directed the State Government to pay an amount of Rs.595.1 Lakhs to the Institute for a four-month block period from 01.03.2020 to 30.06.2020. The institute was directed to provide treatment to 25 children and the remaining amount was directed to be kept in a separate account. The State Government was also granted the liberty to approach the Central Government seeking to release a substantial contribution for making payment of the same to the Institute. Thereafter, on 12.02.2021, this court noted that a sum of Rs.5 Crores has already been released to the Institute and the amount would be sufficient to treat the patients till end of March, 2021. Thereafter, on 23.04.2021 also, a direction was issued to the Government of India to pay a sum of Rs.3 Crores to the Institute whereas, the State Government was directed to pay a sum of Rs.2 Crores to the Institute. It is not in dispute that the aforesaid amounts have been paid to the institute and the institute has sufficient funds to treat the patients upto December, 2022.

4. Learned counsel for the petitioner submitted that the policy framed by the Government of India in the year 2021 does not apply to the petitioner and the directions issued by this court on 24.02.2020 are final in nature. However, it is not disputed that the patients are treated in the institute and the financial assistance has been extended to them.

5. On the other hand, learned Additional Solicitor General of India as well as learned Additional Government Advocate, at the outset, fairly stated 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. It is submitted that every possible effort is being made to extend the treatment to the patients who are suffering from the rare disease. Our attention has also been invited to the National Policy for Rare Diseases, 2021 and it has been stated that the aforesaid Policy shall be implemented in letter and spirit. It is also poin