Delhi HC seeks Centre's response on plea seeking Rs 40 lakh rare disease funding for 3-year-old girl's bone marrow transplant

The Delhi high court has sought the response of the Union Government on an urgent plea filed on behalf of a three-year-old girl suffering from a rare and potentially life-threatening genetic disorder, seeking immediate release of government financial assistance for a life-saving bone marrow transplant.Justice Amit Sharma, hearing the matter during the court's vacation sitting on June 5, issued notice on the petition filed by Baby Sanskriti Bhagat alias Saanchi through her father and natural guardian, and granted time to the Union Government to obtain instructions in the case. The matter has now been directed to be placed before the Vacation Bench on June 8.The petition seeks directions to the Ministry of Health and Family Welfare to sanction and release the entire amount required for the child's haploidentical bone marrow transplant and post-operative treatment directly to Apollo Hospital, Chennai, where the procedure has been recommended. It also seeks directions to ensure that the treatment commences without any further delay.According to the plea, the child suffers from LRBA (Lipopolysaccharide-Responsive Beige-Like Anchor Protein) Deficiency, an extremely rare genetic disorder that severely compromises the body's immune regulation mechanism, leaving patients vulnerable to recurrent infections and serious autoimmune complications.The petition narrates the family's prolonged struggle to obtain a definitive diagnosis. The child allegedly began experiencing recurring fever episodes and severe anaemia within months of birth and underwent multiple blood and platelet transfusions. After consultations at AIIMS Delhi, CMC Vellore and other specialist centres, a Whole Genome Test reportedly conducted in 2025 confirmed the diagnosis of LRBA deficiency.Following evaluation by specialists at Apollo Hospital, Chennai, in March 2026, doctors concluded that a bone marrow transplant was the only curative treatment available. Since no fully matched donor could be found, doctors recommended a haploidentical transplant using the child's father as a half-matched donor.The cost of the treatment, including transplant and post-operative care, has been estimated at approximately ₹40 lakh. The petition states that while Apollo Hospital, Chennai, possesses the specialised infrastructure and expertise required for the complex procedure, the family lacks the financial means to bear the cost after exhausting its savings on diagnosis and preliminary treatment.Significantly, the plea relies on a prescription issued by AIIMS Delhi in April 2026, which allegedly acknowledged that the institution lacked the facilities and resources necessary to provide the specialised treatment required by the child. The petitioner argues that this makes government intervention imperative.Invoking the National Policy for Rare Diseases, 2021, the family contends that patients suffering from rare diseases are entitled to government financial assistance. The petition notes that financial support under the policy was enhanced from ₹20 lakh to ₹50 lakh through a 2022 Office Memorandum issued by the Ministry of Health and Family Welfare.According to the petitioner, representations seeking release of funds were submitted to the authorities on June 1, 2026, but no decision had been communicated, prompting the family to approach the high court.The plea argues that denial of timely financial assistance violates Articles 14 and 21 of the Constitution, emphasising that the right to life includes access to timely and affordable medical treatment. It further contends that where specialised treatment is unavailable in government hospitals, the State is constitutionally obligated to fund treatment at an appropriate private institution.The petitioner has relied upon the Supreme Court's landmark judgment, which recognised the State's constitutional obligation to provide adequate medical facilities, along with various decisions concerning financial assistance for children suffering from rare diseases.The family has stated that any further delay in treatment could lead to irreversible deterioration in the child's health, including the risk of multiple organ failure and a significant reduction in the chances of a successful transplant.The petition has been filed through Anuj Aggarwal and Company, Advocates, led by Advocate Ashok Agarwal, on behalf of the petitioner.