Plea in SC seeking Zolgensma Gene Therapy for a minor child suffering from a rare disease

A bench of Justices Surya Kant and Ujjal Bhuyan issued notice on the petition and listed it in January next year.

"Attorney General for India is requested to have specific instructions for providing immediate financial assistance as per the terms and conditions contained in the notification/Office Memorandum File No.W-11037/40/2022-Grants (RD) dated 19.05.2022 issued by the Rare Diseases Cell, Ministry of Health and Family Welfare, Government of India," the top court said.

The top court also clarified that the said notification is not on record, but senior counsel for the petitioner has referred to an order dated December 9 2024 passed by a coordinate Bench in another matter wherein reference to the above-mentioned notification has been made.

The mother of an 11-month-old minor child represented through her mother has sought urgent judicial intervention concerning the life-threatening condition of the petitioner.

The petitioner has been diagnosed with Spinal Muscular Atrophy Type 1, a rare and severe genetic disorder that, if not treated promptly and appropriately, results in progressive paralysis, respiratory failure, and eventual death, typically within the first two years of life.

The parents of the minor child, who were represented by Senior Advocate Gopal Sankaranarayan, advocates Kavish Aggarwala, Shubham Kumar and Amish Aggarwala, sought an appropriate direction to the Respondents to immediately sanction and release the sum of 214,20,00,000 required for the administration of Zolgensma Gene Therapy for the minor child.

The petitioner also sought to direct the Respondents to take all necessary steps, including facilitating the import of the Zolgensma Gene Therapy injection, and provide the requisite approvals and clearances for its immediate administration to the petitioner. The petitioner also sought to direct the respondents to put a stay on the further transfer of the petitioner's father till the time of the petitioner's treatment. The petitioner also sought to direct the respondents to consider and implement other potential funding mechanisms, including seeking contributions from welfare organizations and facilitating crowd-funding, including seeking permission from the relevant department authorities, to secure the necessary funds for the treatment.

The petitioner also sought to direct the respondent to issue a pop-up notification on their department website regarding the crowdfunding. The petitioner also sought to award costs to the Petitioners for the expenses incurred in pursuing this petition.

"That the petitioner's father, Corporal Prashant Singh who is serving in 7 BRD of Indian Air Force, whose 11-month-old daughter was diagnosed with SMA Type 1 on 10 June 2024 at AH R&R Hospital, New Delhi. The condition is caused by a homozygous deletion of Exon 7 in the SMN1 gene, as per the medical report. The only known life-saving treatment for SMA is Zolgensma Gene Therapy, an FDA-approved therapy that has demonstrated the potential to halt or reverse the disease if administered within the first two years of life," the petition said that the treatment cost is far beyond the financial capacity of petitioner's parent.

"The petitioner's parents have approached the relevant departments and the government but has faced delays and lack of assistance. The denial of financial support contravenes the petitioner's fundamental rights under Articles 14 and 21, as well as the government's obligation to provide adequate healthcare to Armed Forces personnel and their dependents in cases of rarest of rare diseases, the petition said.

Furthermore, the petitioner submitted that the government's failure to provide adequate financial support for treatment violates the right to equality under Article 14 of the Constitution, as the petitioner's child is being denied equal access to life-saving treatment available to others in similar circumstances.

The petitioner further submitted that the failure of the authorities to allocate funds for funding treatment of rare diseases constitutes a dereliction of duty on the part of the government. The petitioner also contended that the government has failed to implement the provisions of the National Policy For Rare Disease hereinafter referred as "NPRD", 2021, which mandates assistance for rare disease treatments, further exacerbating the violation of the child's rights under Articles 14 and 21. (ANI)