Imagine watching your child slowly fade away, not because there's no cure, but because of bureaucratic delays. This is the heartbreaking reality for countless families in India battling rare diseases. Every week that passes brings more preventable deaths, a direct consequence of the stalled implementation of the National Policy for Rare Diseases (NPRD) 2021.
The tragedy isn't a lack of medical breakthroughs; it's a failure to act. India recognized the promise of modern medicine in treating rare genetic disorders when it established the NPRD in 2021. The policy envisioned state-funded support, specialized Centers of Excellence, and financial aid mechanisms, effectively affirming that the constitutional right to health extends to every citizen, regardless of how rare their condition might be. Think of it as a commitment to leave no one behind.
But here's where it gets controversial... While the policy was a monumental step forward, its execution has been painfully slow. The Delhi High Court stepped in with a landmark order in 2024, demanding the NPRD's operationalization and the establishment of a National Fund for Rare Diseases (NFRD) with a substantial allocation of ₹974 crores. The court's intention was crystal clear: to eliminate financial barriers and ensure uninterrupted treatment for these vulnerable patients.
And this is the part most people miss: The High Court's intervention wasn't just about money; it was about dignity and the right to life. The court also pushed for standardized treatment protocols, encouraged local drug manufacturing to bring down costs, and demanded time-bound delivery mechanisms to cut through red tape. This was a beacon of hope for patients and their families, a promise of a future where rare diseases wouldn't mean a death sentence.
However, that hope is now fading. Over 50 patients have tragically died in the last two years because the High Court’s directives were not followed. The initial ₹50 lakh ceiling on treatment costs was exhausted, halting life-saving therapies despite the court's explicit intention to remove such limits. Each month of delay inflicts irreversible damage, pushing families into financial ruin. It’s a devastating cycle of hope, followed by despair.
The reason for this inaction? The National Fund for Rare Diseases remains stuck in procedural delays, primarily due to ongoing Special Leave Petition (SLP) proceedings before the Supreme Court. While legal processes grind on, children with rare diseases are running out of time. Even short interruptions in therapy can cause irreversible harm, negating years of progress.
The frustrating part is that the infrastructure to act is already in place. The National Rare Disease Committee (NRDC) has meticulously reviewed therapies and created a detailed implementation roadmap. Centers of Excellence, including prestigious institutions like AIIMS Delhi and the Indira Gandhi Institute of Child Health in Bengaluru, are fully equipped and ready to deliver treatments. The only thing missing is the funding and the political will to overcome bureaucratic obstacles.
This is where things get really interesting: Some argue that the Supreme Court's involvement is a necessary step to ensure a fair and sustainable solution. Others believe that the delays are unacceptable and that the court should prioritize the immediate needs of these patients. What do you think?
The Delhi High Court envisioned a system where rare disease management was transformed into comprehensive care. Instead, India is trapped in a policy vacuum, effectively suspending the right to life and health for some of its most vulnerable citizens. It's a constitutional crisis unfolding in slow motion.
It's not too late to change course. The government can act decisively by operationalizing sustainable funding mechanisms for high-risk patients, establishing a transparent disbursal framework, and resuming treatment without further delay. The lives of these children depend on it.
With the matter now before the Supreme Court, it is crucial that the court recognizes the escalating fatalities as a humanitarian crisis. An immediate order to comply with the High Court's directives would restore hope to the patient community and prevent further loss of life. The next hearing presents a critical opportunity to act.
Inaction is no longer just a delay; it's a denial of life, of dignity, and of the constitutional promise of equal protection under the law. As the Supreme Court prepares to address the matter of rare diseases, India's rare disease community doesn't seek sympathy; they demand justice.
Now, let's talk... Do you believe the Supreme Court should intervene immediately, even if it means potentially bypassing some procedural steps? Or should the legal process take its course, even if it means further delays in treatment? What responsibility do you think the government has to ensure that these patients receive the care they need, regardless of the cost? Share your thoughts in the comments below.
