Why the Launch of ‘SHAURYA: A Father’s Promise’ May Prompt Judicial Review of India’s Duty to Provide Health Care for Rare Disease Patients

On International MPS Awareness Day 2026, the Deputy Chairman of the Rajya Sabha, Harivansh, formally introduced to the public a newly published work entitled “SHAURYA: A Father’s Promise” in the capital city of Delhi, an occasion that combined literary presentation with advocacy for health policy. The book, authored by Saurabh Singh, narrates the personal and medical journey of his son who is afflicted with mucopolysaccharidosis type II, commonly abbreviated as MPS II, thereby providing a poignant account of the clinical challenges and familial resilience associated with this rare genetic disorder. In addition to detailing the medical complexities, the narrative explicitly highlights the broader struggles experienced by families confronting rare diseases, including obstacles in obtaining accurate diagnosis, accessing specialized treatment, and navigating the financial and emotional burdens imposed by such conditions. Through this personal testimony, the author calls for the creation of a comprehensive National Rare Disease Policy, a systematic framework that would aim to coordinate research, ensure equitable distribution of therapeutic resources, and establish clear guidelines for the support of affected individuals across the nation. The launch, attended by members of the parliamentary community and representatives of civil society, underscores the growing recognition within the public sphere that rare disease advocacy has transcended mere charitable concerns to become an issue of public health governance and statutory responsibility. By situating the book’s release within the context of International MPS Awareness Day, the Deputy Chairman aimed to draw national attention to the urgency of legislative and executive measures that could address the systemic gaps highlighted by the personal account. The event thereby functions not merely as a literary unveiling but also as a strategic platform for policy dialogue, potentially influencing future deliberations within the health ministry, parliamentary committees, and the judiciary regarding the constitutional duty to safeguard the right to health for persons suffering from rare conditions. Consequently, the publicized promise encapsulated in the title reflects a broader societal commitment to translate personal tragedy into collective action, urging governmental bodies to adopt concrete statutory mechanisms that would guarantee accessible care, research funding, and legal protections for all families confronting similar rare disease challenges.

One question is whether the absence of a dedicated National Rare Disease Policy could be interpreted as a failure by the State to fulfil its constitutional obligation under Article 21 to protect the right to health for individuals afflicted with rare genetic disorders. The legal position would likely turn on the extent to which courts have recognized health as an integral component of life and liberty, and whether that recognition obliges the legislature to enact specific statutory frameworks addressing the unique medical, financial, and social needs of rare disease patients.

Perhaps the more important legal issue is whether affected families, civil‑society groups, or even a Member of Parliament could file a public‑interest litigation seeking a judicial direction that the government formulate and implement a comprehensive policy to address the systemic deficiencies highlighted by the book’s narrative. The answer may depend on the courts’ willingness to interpret the right to health as a justiciable claim that can compel legislative or executive action, balancing the principle of separation of powers with the constitutional promise of dignity and equality.

Another possible view is that the executive, in drafting a National Rare Disease Policy, would be required to observe administrative‑law doctrines of reasoned decision‑making, publication of draft proposals, and provision of a hearing to stakeholders, thereby ensuring procedural fairness before final adoption. Perhaps the procedural significance lies in the requirement that any statutory or regulatory measures emerging from such a policy must be transparent, non‑arbitrary, and subject to judicial review, ensuring that the rights of patients are not compromised by unchecked administrative discretion.

If the courts were to find that the state’s inaction violates constitutional guarantees, a possible remedy could include a mandamus directing the health ministry to draft and present a concrete policy framework within a specified timeframe, thereby providing enforceable relief. Alternatively, the judiciary might order interim financial assistance schemes for affected families, stipulating that the government allocate funds for treatment and research pending the eventual adoption of a full‑scale policy, thereby addressing immediate needs.