Delhi High Court Forms High-Level Committee to Revamp Rare Disease Crowdfunding Platform

New Delhi – In a significant move highlighting the judiciary's role in overseeing the implementation of public welfare policies, the Delhi High Court has constituted a high-level committee to supervise and revitalise the Union Government's digital crowdfunding platform for treating rare diseases. The order, passed by Justice Sachin Datta, addresses the platform's stark failure to garner funds and provides a structured mechanism to enhance its efficacy, particularly through engagement with Public Sector Undertakings (PSUs) and their Corporate Social Responsibility (CSR) initiatives.

The decision stems from a poignant plea filed by a minor girl diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a life-threatening genetic disorder. Her parents, despite securing the necessary recommendations under the National Policy for Rare Diseases (NPRD), 2021, were unable to import the exorbitantly priced life-saving therapy. This individual case became the catalyst for a broader judicial examination of the systemic challenges plaguing the funding mechanism for rare disease treatments in India.

The Core Issue: A Failing Platform and the Limits of Mandamus

At the heart of the proceedings was the Union Ministry of Health and Family Welfare's voluntary crowdfunding platform. Intended as an innovative solution to the high cost of treatment, the platform's performance has been alarmingly poor. The Court took judicial notice of the publicly available data, which painted a grim picture: "As per the publicly available data, till date, for approximately 3981 patients registered, only a meagre amount of Rs.3,91,589/- has been collected on the said platform."

This negligible collection underscores a critical gap between policy intent and practical outcome. While the petitioner sought to direct PSUs to allocate CSR funds for her treatment, the Court grappled with the legal limitations of such a directive. Justice Datta concurred with the Additional Solicitor General's submission that CSR funding decisions are the exclusive domain of the respective companies' boards. The judgment reiterates a crucial legal principle: a writ of mandamus cannot be issued to compel a company to earmark its CSR funds for a specific cause, as these decisions are planned and executed by the company's board.

However, the Court did not stop there. It skillfully navigated this limitation by pivoting from a directive to a proactive, persuasive approach. Justice Datta observed that while a direct order is impermissible, it is "certainly be desirable to sensitise the PSUs to undertake activities or initiatives relating to individuals suffering from rare diseases and to earmark CSR funds for the same." This sets the stage for the primary function of the newly formed committee.

A Mandate for Proactive Oversight and Sensitization

Accepting the petitioner's suggestion, the Court constituted a powerful committee tasked not just with passive supervision but with active promotion and operational enhancement of the crowdfunding platform. The composition of the committee reflects the seriousness of the mandate, bringing together key policymakers from across government departments:

• Chairperson: Dr. Rajiv Bahl, Secretary, Department of Health Research, and Director General of the Indian Council of Medical Research (ICMR).
  
  
• Member: Dr. V.K. Paul, Member (Health), Niti Aayog.
  
  
• Member: A Joint Secretary from the Ministry of Corporate Affairs (MoCA), overseeing CSR Rules implementation.
  
  
• Member: A Joint Secretary from the Department of Public Enterprises, Ministry of Finance.

The committee's mandate is multi-faceted. Firstly, it must take "adequate steps to spread awareness regarding the existence and objective of the platform." The aim, as the Court articulated, is to "encourage potential donors to make contributions." Secondly, and perhaps most crucially, the committee is directed to "reach out to the Public Sector Undertakings (PSUs) to sensitise them and encourage them to make voluntary contributions." This structured engagement, led by high-ranking officials, is designed to achieve what a judicial writ could not.

Furthermore, the committee's responsibilities extend to the broader implementation of the NPRD 2021. It is tasked to "ensure that necessary action is taken in furtherance of and for effectuating the NPRD 2021, and to ensure that the outcomes contemplated thereunder are achieved to the maximum extent." This involves liaising with various ministries and authorities, effectively positioning the committee as a nodal body for coordinating efforts related to rare diseases. To ensure accountability and momentum, the Court has mandated monthly meetings.

Legal and Policy Implications for Practitioners

This judgment offers several key takeaways for the legal community:

1. Judicial Creativity in Public Interest Litigation: The order is a masterclass in judicial pragmatism. Faced with the legal inability to issue a direct mandamus on CSR funds, the Court fashioned an alternative remedy by creating an institutional mechanism for oversight and persuasion. This serves as a potent precedent for future PILs where government schemes are underperforming due to systemic inertia or lack of coordination.
   
   
2. The Evolving Jurisprudence on CSR: The decision clarifies the judiciary's stance on CSR. While courts will refrain from micromanaging corporate boards' CSR decisions, they are willing to create high-level bodies to "sensitise" and "encourage" contributions towards critical public health issues. This opens up a new avenue for advocacy, shifting the focus from seeking direct court orders to pushing for institutional engagement with the corporate sector.
   
   
3. Oversight of Digital Governance Platforms: As governance increasingly moves to digital platforms, this case establishes a precedent for judicial intervention when such platforms fail to deliver on their promises. The order suggests that the mere creation of a digital tool is insufficient; its effective operation and achievement of stated goals are subject to judicial scrutiny.
   
   
4. A Shift from Medical Problem to Human Rights: Justice Datta's observation that the challenges of rare diseases "are required to be seen through a prism of inclusion and humane lens rather than being merely considered as a medical problem" is significant. This framing elevates the issue from one of healthcare allocation to one of fundamental human dignity and inclusion, providing a stronger basis for future legal challenges.

Concluding the order, the Court expressed hope that the funds raised under the new committee's supervision would be utilized for the treatment of the petitioner, Miss Kiara Rawat, without prejudicing the rights of other similarly situated individuals. This final note brings the focus back to the human cost of policy failure and the urgent need for the newly formed body to succeed.

The matter is scheduled for a follow-up hearing on December 22, where the initial progress of the committee will likely be reviewed, marking the beginning of a new, judicially-monitored chapter for rare disease funding in India.