The Bombay High Court has recently sought a response from the Union Government on a public interest litigation (PIL) seeking inclusion of Subacute Sclerosing Panencephalitis (SSPE) under the National Policy for Rare Diseases (NPRD), 2021. This development marks an important moment in the evolving interface between public health policy and constitutional rights, particularly the right to life and health under Article 21. By calling for the Centre’s stand, the Court has signalled its willingness to examine whether policy exclusions in the domain of rare diseases can withstand constitutional scrutiny.
The PIL, filed by a parent who lost his minor son to SSPE, highlights a glaring policy gap. SSPE is a rare and fatal neurological condition caused by a mutated measles virus, leading to progressive brain degeneration and eventual death. Despite the severity of the disease, it remains excluded from the NPRD framework, which currently provides financial assistance for select rare diseases. The petitioner has argued that this exclusion leaves affected families without any institutional support, effectively forcing them to bear an unbearable financial and emotional burden.
A Division Bench of the High Court has taken cognisance of these concerns and directed the Union Government to file a detailed reply. The Court’s intervention is significant because it implicitly raises the question whether exclusion from welfare schemes particularly in life-threatening conditions—can be justified under the constitutional guarantee of equality and non-arbitrariness. In doing so, the Court has opened the door for a deeper examination of how public health policies are structured and whom they ultimately serve.
The case also brings into sharp focus the economic realities faced by families dealing with SSPE. Treatment is largely palliative, involving continuous medical care, physiotherapy, and supportive interventions, often costing tens of thousands of rupees per month. In the absence of insurance coverage or state assistance, families are frequently compelled to exhaust savings, incur debt, or sell assets. The petition underscores that such financial distress, coupled with the inevitability of the disease’s progression, leads to profound psychological trauma, raising concerns about dignity and humane treatment.
At the heart of the dispute lies a critical constitutional question: can the State deny support for a disease on the ground that it is incurable? The existing policy framework tends to prioritise diseases where curative treatment is available, thereby excluding conditions like SSPE where only symptomatic management is possible. This approach reflects a utilitarian logic in resource allocation but raises serious concerns about equality and fairness. It creates a hierarchy where patients with treatable conditions receive support, while those with incurable illnesses are effectively left to fend for themselves.
The litigation also engages with the broader jurisprudence on the right to health. Indian courts have consistently expanded the scope of Article 21 to include access to medical care and dignified living conditions. In this context, the petitioner’s argument is that denial of support for SSPE patients amounts to a violation of this fundamental right. The case may therefore test the extent to which courts are willing to intervene in policy matters where fundamental rights are implicated.
From a policy perspective, the case exposes structural limitations in the design of the National Policy for Rare Diseases. By linking financial support to curability, the policy overlooks the needs of patients requiring long-term care. This raises an important normative question: should public health policy be driven solely by outcomes, or should it also account for suffering, care, and quality of life? The answer to this question has far-reaching implications for how welfare frameworks are conceptualised in a constitutional democracy.
While courts traditionally exercise restraint in matters of policy, the facts of this case may necessitate a more interventionist approach. The absence of any alternative support mechanism for SSPE patients strengthens the argument that the policy, in its current form, may be arbitrary. At the same time, the judiciary must balance this concern with respect for executive discretion in allocating limited resources, making this a complex and delicate adjudicatory exercise.
In conclusion, the Bombay High Court’s direction to the Centre is more than a procedural step—it represents a potential shift toward a more inclusive understanding of health rights. The outcome of this case could redefine the contours of state responsibility, ensuring that public health policies are not merely efficient but also equitable. Ultimately, it reinforces a fundamental constitutional principle: that dignity and care must extend to all individuals, regardless of whether their condition is curable or not.
