Deputy Chairman Harivansh Unveils ‘SHAURYA: A Father’s Promise’ on International MPS Awareness Day, Raising Questions Over India’s Rare Disease Policy

On the solemn occasion of International Mucopolysaccharidosis (MPS) Awareness Day, observed globally on the fourth of June in the year two thousand twenty‑six, the Deputy Chairman of the Upper House of Parliament, the Honourable Harivansh, presided over a ceremonial launch in the capital city of New Delhi, wherein the newly authored volume entitled “SHAURYA: A Father’s Promise” was presented to assembled dignitaries, members of the press, and representatives of patient‑advocacy organisations, thereby foregrounding a matter of public health that has hitherto lingered on the margins of policy discourse.

The disorder at the heart of the narrative, Mucopolysaccharidosis type II, colloquially known as Hunter syndrome, is a lysosomal storage disease of X‑linked recessive inheritance that manifests in early childhood with progressive neuro‑cognitive decline, skeletal deformities, and life‑limiting organ dysfunction, a clinical profile that exacts a heavy toll upon affected families and imposes a considerable burden upon a health system still grappling with adequate diagnostic pathways and therapeutic provision.

The author, identified as Saurabh Singh, a father whose private anguish has been transmuted into public testimony, recounts in painstaking detail the odyssey of his son’s battle against the inexorable progression of MPS II, describing encounters with delayed diagnoses, fragmented specialist referrals, and the financial exigencies attendant upon procuring enzyme replacement therapy, thereby furnishing a rare, intimate chronicle that augments statistical reports with lived experience.

“SHAURYA: A Father’s Promise” does not merely catalogue personal suffering; it augurs a clarion call for a comprehensive National Rare Disease Policy, urging legislators, the Ministry of Health and Family Welfare, and the broader medical establishment to coalesce around a framework that would institutionalise early screening, subsidise high‑cost therapeutics, and establish a centralised registry to monitor epidemiological trends, all of which the author contends are presently deficient in India’s health governance architecture.

While the Union Government has, over the past few years, intimated intention to formulate a rare disease policy, the absence of an enacted statutory instrument as of the date of the book’s launch underscores a disjunction between political rhetoric and legislative execution, a gap that becomes starkly evident when juxtaposed against the aspirations articulated in the National Health Policy 2017 and the subsequent commitments to achieve universal health coverage.

The official remarks delivered by Deputy Chairman Harivansh, though couched in the dignified language of parliamentary decorum, reiterated the House’s resolve to examine the exigencies presented by rare disease families, yet stopped short of committing concrete fiscal allocations or delineating an actionable timeline, thereby reflecting a familiar pattern of commendable intent hampered by procedural inertia within the apparatus of executive decision‑making.

Given that the Union Health Ministry has yet to promulgate a binding National Rare Disease Policy despite repeated parliamentary references, does the prevailing legislative inertia not betray a constitutional duty to safeguard the most vulnerable citizens from preventable neglect, and might the absence of a statutory mandate for coordinated care be interpreted as an implicit abdication of responsibility for ensuring equitable access to life‑saving treatments?

In light of the considerable public expenditure incurred by families like that of Saurabh Singh in procuring privately sourced enzyme therapies, should the state be compelled, under principles of distributive justice and the right to health enshrined in Article 21 of the Constitution, to establish a transparent, evidence‑based funding mechanism, and does the current reliance on ad‑hoc compassion‑based assistance not expose a systemic defect that undermines the very notion of a welfare‑state accountable to its citizens?

Published: June 4, 2026