Delhi High Court Hears Centre's Refusal to Fund Treatment for Child with LRBA Deficiency Under India's Rare Disease Policy
Key Insights
The Union Government informed the Delhi High Court that a three-year-old child with LRBA Deficiency (search) is ineligible for financial aid under the National Policy for Rare Diseases (NPRD), 2021.
LRBA Deficiency (search) is not among the 63 notified rare diseases covered by the policy, which caps financial assistance at Rs 50 lakh per eligible patient.
The Centre argued that extending benefits beyond the notified list would constitute judicial modification of executive policy and is not constitutionally mandated.
The Union Government has informed the Delhi High Court that a three-year-old child diagnosed with LRBA (Lipopolysaccharide-Responsive Beige-Like Anchor Protein) Deficiency does not qualify for financial assistance under the National Policy for Rare Diseases (NPRD), 2021. The government's position, submitted in an affidavit by the Ministry of Health and Family Welfare, rests on the fact that the condition is not included among the 63 rare diseases currently notified for coverage under the scheme.
The affidavit was filed in response to a writ petition brought by the child's father and natural guardian, who sought a court direction compelling the Union Government to sanction and release funds for the child's treatment under the NPRD, 2021 framework.
Policy Framework and Eligibility Constraints
Under the NPRD, 2021, eligible patients suffering from specified rare diseases can receive financial support of up to Rs 50 lakh. However, this assistance is strictly limited to the 63 notified rare diseases identified within the policy framework. According to the Centre's affidavit, LRBA Deficiency (search)—a rare genetic immune disorder—has not been notified as a covered disease, and therefore the petitioner does not satisfy the prescribed eligibility criteria.
The government stated that it is "constrained in law and policy" from extending benefits beyond the notified list and maintained that the denial of assistance was not discriminatory but rather reflected the uniform application of the policy to all similarly situated patients. The affidavit asserted that no arbitrariness or illegality could be attributed to the decision.
Constitutional and Jurisdictional Arguments
Addressing the petitioner's reliance on Article 21 of the Constitution, which protects the right to life, the Union Government acknowledged that the right to health is encompassed within this provision. However, it argued that there exists no fundamental right requiring the Union to fully underwrite all medical treatment costs. The Centre further noted that public health and hospitals fall primarily within the jurisdiction of State Governments under the constitutional framework.
The government also cautioned that directing financial assistance for a disease not covered by the NPRD, 2021, would effectively amount to judicial modification of government policy—a function that lies within the exclusive domain of the executive. The affidavit emphasized that expansion of the list of covered diseases is a policy decision and cannot be mandated through judicial intervention.
Operational Structure of NPRD, 2021
The affidavit outlined the operational framework of the NPRD, 2021, which designates 15 Centres of Excellence across the country for the diagnosis and treatment of rare diseases. Treatment recommendations and funding requests are routed through these centres, with financial assistance capped at Rs 50 lakh per patient, provided the disease in question is covered under the policy.
The Union Government has urged the Delhi High Court to dismiss the petition insofar as it seeks a direction to grant financial assistance contrary to the eligibility criteria laid down under the NPRD, 2021.