The Centre has informed the Delhi High Court that it cannot independently provide financial assistance from the National Policy for Rare Diseases (NPRD) funds to a three-year-old child suffering from LRBA (lipopolysaccharide-responsive beige-like anchor protein) deficiency, a rare genetic immune disorder, because the condition is not included in the list of notified rare diseases covered under the scheme.
This position was taken by the Ministry of Health and Family Welfare in response to a plea filed by the child's father and natural guardian, who sought directions for the Union government to sanction and release financial aid for her treatment under the NPRD 2021.
The Centre submitted that while NPRD 2021 offers financial support of up to Rs 50 lakh to eligible patients with specified rare diseases, assistance is currently limited to 63 notified rare diseases identified under the policy framework. Since LRBA deficiency is not among them, the petitioner does not meet the eligibility criteria prescribed under the scheme.
The government stated that 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 rather resulted 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. Expanding the list of covered diseases is a policy decision, 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 that while the right to health is protected under the right to life, there is no fundamental right requiring the government to fully underwrite all medical treatment costs. It pointed out that public health and hospitals are matters primarily under the jurisdiction of state governments 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.
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