The Supreme Court asked the Centre to reply to a plea for help for the daughter of an Indian Air Force official suffering from Spinal Muscular Atrophy (SMA) Type 1. This rare genetic disease weakens muscles and affects movement, needing costly treatment. The plea stresses the need for government support. SMA Type 1 severely impacts infants and young children.
New Delhi: The Supreme Court poised to review a petition requesting medical assistance for an 11-month-old child suffering from a rare, life-threatening condition.
A Bench comprising Justice Surya Kant and Justice Ujjal Bhuyan acknowledged the family’s financial difficulties in affording the treatment, which amounts to approximately Rs.14.2 crore, and sought a response from the Central government regarding immediate financial support.
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The Court ordered,
“The learned Attorney General for India is requested to have specific instructions for providing immediate financial assistance as per the terms outlined in 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,”
The Court’s intervention prompted by a plea from the child’s mother, who sought directions for the release of funds necessary for her daughter’s treatment.
The petition states that the child, whose father is an Indian Air Force official, has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder.
Without timely treatment, this condition can lead to progressive paralysis and respiratory failure, often resulting in death within the first two years of life.
The petition highlighted that the only known life-saving treatment for SMA is the FDA-approved Zolgensma Gene Therapy, which can stay or reverse the disease if administered before the age of two.
However, the treatment’s cost of Rs.14.2 crore is prohibitively high for the child’s family. The Court was informed that the parents had made several attempts to secure assistance from relevant government departments but had received no support.
The denial of financial aid from the government was argued to violate the child’s fundamental rights under Articles 14 (equality before law) and 21 (protection of life and personal liberty) of the Constitution of India, as well as the government’s obligation to provide adequate healthcare for Armed Forces personnel and their dependents.
Additionally, the petition emphasized that despite efforts to raise funds through donations and welfare organizations, the family faced obstacles in crowd-funding from defense personnel due to the lack of explicit permission or a circular from the relevant department.
This limitation further complicated their attempts to secure the necessary funds for this urgent treatment, which requires import approval from the Government of India.
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The Court instructed the Central government and other relevant authorities to file their responses to the petition by January 2, 2025.
Senior Advocate Gopal Sankaranarayan, along with advocates Amish Aggarwala, Kavish Aggarwala, Shubham Kumar, Ritesh Singh, Aditi Gupta, Manju Aggarwala, Suraj Pathak, Kumud Jha, and Pradyut Kashyap, represented the petitioner.
Articles 14 and 21 of the Constitution of India are fundamental rights that safeguard equality and personal liberty. Article 14 ensures that every person is equal before the law and prohibits discrimination, guaranteeing equal protection under the law for all individuals. Article 21, on the other hand, protects the right to life and personal liberty, stating that no person can be deprived of these rights except according to a procedure established by law. Together, these articles form the foundation of India’s constitutional framework, ensuring fairness, justice, and protection of individual freedoms.
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