Child with rare disease not eligible for aid under NPRD: Centre to HC

The Centre informed the Delhi High Court that a 3-year-old with LRBA Deficiency is not eligible for financial aid under the National Policy for Rare Diseases, 2021, because the condition is not among the 63 notified diseases covered by the scheme.

The Union Government has informed the Delhi High Court that a three-year-old child suffering from LRBA (Lipopolysaccharide-Responsive Beige-Like Anchor Protein) Deficiency is not eligible for financial assistance under the National Policy for Rare Diseases (NPRD), 2021, as the condition does not feature in the list of notified rare diseases covered under the scheme.

The submission was made in an affidavit filed by the Ministry of Health and Family Welfare in a writ petition instituted by her father and natural guardian, seeking directions to the Union Government to sanction and release financial assistance for her treatment under the NPRD, 2021.

Centre Cites Policy Constraints

The Centre told the Court that while the 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.

According to the affidavit, LRBA Deficiency has not been notified as a covered disease and, therefore, the petitioner does not satisfy the eligibility criteria prescribed under the scheme.

The government contended 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 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.

Legal Arguments Against Relief

Opposing the relief sought, the Centre further submitted that directing financial assistance for a disease not covered by NPRD, 2021, would effectively amount to a judicial modification of government policy, which falls within the exclusive domain of the executive. The affidavit states that expansion of the list of covered diseases is a policy decision and not one that can be mandated through judicial intervention.

Right to Health vs. Financial Obligation

Addressing the petitioner's reliance on Article 21 of the Constitution, the Union Government argued that while the right to health is protected under the right to life, there is no fundamental right requiring the Union to fully underwrite all medical treatment costs. It pointed out that public health and hospitals are matters falling primarily within the jurisdiction of State Governments under the Constitution.

The affidavit also outlined the framework of the 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.

The Union Government has therefore urged the 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.

The petition has been filed on behalf of child, who is suffering from LRBA Deficiency, a rare genetic immune disorder. The child sought financial assistance from the Union Government under the National Policy for Rare Diseases, 2021.

However, the Centre has taken the stand that the disease is not among the 63 rare diseases presently notified under the policy and therefore falls outside the ambit of financial support available under the scheme. (ANI)

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