New Delhi: The Centre has told Delhi High Court it can’t on its own extend financial assistance from funds under the National Policy for Rare Diseases (NPRD) to a three-year-old child suffering from LRBA (lipopolysaccharide-responsive beige-like anchor protein) deficiency, a rare genetic immune disorder, as the condition does not feature in the list of notified rare diseases covered under the scheme.The stance by the ministry of health and family welfare came in response to a plea filed by the patient’s father and natural guardian, seeking directions to the Union govt to sanction and release financial assistance for her treatment under NPRD 2021.The Centre submitted that while NPRD 2021 provides financial support of up to Rs 50 lakh to eligible patients suffering from specified rare diseases, assistance is currently restricted to 63 notified rare diseases identified under the policy framework, where LRBA deficiency is not covered. Therefore, it said, the petitioner does not satisfy the eligibility criteria prescribed under the scheme.Govt said it is “constrained in law and policy” from extending benefits beyond the notified list and argued that the denial of assistance was not discriminatory, but instead flowed from the uniform application of the policy to all similarly situated patients. It maintained that no arbitrariness or illegality could be attributed to the decision. Expansion of the list of covered diseases is a policy decision, and not one that can be mandated through judicial intervention, it added.Addressing the petitioner’s reliance on Article 21 of the Constitution, the Centre said while the right to health is protected under the right to life, there is no fundamental right requiring govt to fully underwrite all medical treatment costs. It pointed out that public health and hospitals are matters falling primarily within the jurisdiction of state govts under the Constitution.The affidavit also outlined the framework of NPRD 2021, under which 15 Centres of Excellence across the country have been designated for the diagnosis and treatment of rare diseases. It explained that treatment recommendations and funding requests are routed through these centres, with financial assistance capped at Rs 50 lakh per patient where the disease is covered under the policy.
