3-year-old girl, rare disease, and a 'constitutional right': Delhi HC seeks Centre's response on funding plea

AThree-year-old young lady woe from a rarified genetical disarray has approached the Delhi High Court through her father, seeking immediate government financial assistance for a life-saving bone marrow transplant. The family has urged the court to direct the Union Government to release the required funds without delay, arguing that any further wait could seriously threaten the child's life.Hearing the matter during the court's vacation sitting on June 5, Justice Amit Sharma issued notice to the Union Government and granted it time to obtain instructions. The matter has been directed to be placed before the Vacation Bench on June 8, according to news agency PTI.What did the plea say?The petition has been filed through Anuj Aggarwal and Company, Advocates, led by Advocate Ashok Agarwal, on behalf of the petitioner.Also read | HC vacates order restraining trial court from framing charges in Delhi riots larger conspiracy caseThe 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, Baby Sanskriti Bhagat alias Saanchi, 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.Family says diagnosis came after a long medical journeyThe petition states that the child began suffering from 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.Also read | Technical reading of law can’t defeat reproductive rights: Delhi high courtFollowing an 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, they recommended a haploidentical transplant using the child's father as a half-matched donor.Treatment estimated to cost ₹40 lakhThe petition states that the treatment, including the transplant and post-operative care, is estimated to cost approximately ₹40 lakh. While Apollo Hospital, Chennai, has the specialised infrastructure and expertise required for the procedure, the family says it has exhausted its savings on diagnosis and preliminary treatment and cannot afford the cost.The plea also 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. According to the petitioner, this makes government intervention imperative.Family cites Rare Diseases Policy and constitutional rightsInvoking 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 further 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 also 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 a landmark Supreme Court judgment recognising 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.(With PTI inputs)