New Delhi [India], August 26 (ANI): The Delhi High Court has issued notice to the Delhi government, Chacha Nehru Bal Chikitsalaya, AIIMS and the Centre on a petition seeking immediate and uninterrupted Growth Hormone/Somatropin treatment for an eight-year-old boy suffering from a genetically documented growth disorder linked to an ACAN gene mutation. Justice Swarana Kanta Sharma has listed the matter for disposal on September 25.
The petition has been filed by 8-year-10-month-old Nayan Mishra through his natural father, represented by advocates Ashok Agarwal and Kumar Utkarsh. The plea invokes the minor's fundamental rights under Articles 14 and 21, including the right to life, health and access to necessary medical treatment. The child was present in court during the hearing.
According to the petition, Nayan was first taken to Chacha Nehru Bal Chikitsalaya in November 2022 over inadequate growth and failure to gain appropriate height and weight. He was subsequently referred to AIIMS, where genetic evaluation found a likely pathogenic variant in the ACAN gene associated with short stature and advanced bone age.
AIIMS prescribed Growth Hormone/Somatropin therapy for his condition, and the first dose was administered at Chacha Nehru Bal Chikitsalaya on October 11, 2024. However, the petition alleges that the treatment was repeatedly interrupted because the prescribed injection was not consistently available at the government hospital, with interruptions on some occasions extending up to nearly three months.
The petition states that Nayan received his last Growth Hormone/Somatropin injection on July 27, after which the treatment was again stopped. It further says that on several occasions his father had to procure the medicine himself or obtain it through alternative government arrangements to prevent interruptions.
An AIIMS estimate certificate dated June 24 has put the approximate cost of the treatment at Rs 9 lakh for three years. The petition says the AIIMS consultant recorded that the child has severe short stature due to ACAN mutation and would benefit from Growth Hormone therapy. It further states that the family is financially constrained and unable to bear the recurring cost of the treatment.
The plea says the repeated interruption of treatment during a crucial period of the child's physical growth could result in loss of valuable treatment time. It seeks directions to the authorities to immediately arrange the prescribed injections and ensure their uninterrupted availability, including through another government medical institution such as AIIMS if the medicine is unavailable at Chacha Nehru Bal Chikitsalaya.
The petition also refers to representations seeking financial assistance from the Bihar government and the Prime Minister's Medical Relief Fund, stating that the family has been unable to independently meet the cost of the treatment.
The plea invokes the National Policy for Rare Diseases, 2021 and relies on an earlier Delhi High Court judgment concerning uninterrupted treatment for a minor suffering from a growth-related disorder.
The court has sought responses from the concerned authorities and has listed the matter for disposal on September 25. (ANI)
Delhi HC issues notice to Centre, Delhi Govt, AIIMS over plea for uninterrupted growth hormone treatment to 8-year-old
