Supreme Court Asks Why: Imagine having hope in your hands, but not being able to hold onto it because it’s simply too expensive. That’s the harsh reality for many people in India suffering from Spinal Muscular Atrophy (SMA). SMA is a rare but severe genetic disorder that affects muscle strength and movement. For families affected by it, one medicine, Risdiplam, offers hope. But its price tag in India makes it feel like a luxury only a few can afford. Recently, this heartbreaking truth reached the ears of the Supreme Court of India, and now, things might finally begin to change.
One Woman’s Fight Sparks a National Conversation
The case began with a young woman named Seba PA, just 24 years old, who has been bravely fighting SMA. Her legal team told the Supreme Court that the drug she needs to survive, Risdiplam, is available at a lower cost in Pakistan and China countries right next door. So why is it so expensive in India? The Court took this question seriously. It issued a notice to the drug’s manufacturer, F. Hoffmann-La Roche Ltd., asking them to explain this price difference and whether the medicine can be sold at similar lower prices in India too. The Supreme Court didn’t just hear the facts—it heard the emotion, the struggle, the human pain behind the numbers.
The Court’s Compassionate Stand on Rare Diseases
During the hearing, the bench led by Chief Justice Sanjiv Khanna showed remarkable empathy. They acknowledged how urgent and life-altering this issue is, not just for Seba, but for hundreds of others across India living with SMA. They asked the company to respond with transparency and even invited the Indian government to explore negotiating with the manufacturer for fairer pricing. By keeping its interim order active, the Court has ensured that Seba’s case remains a priority. And while the Court has temporarily paused a Kerala High Court decision to grant her extra funding for the treatment, it has left room for negotiation, charity, and hope.
Why Does the Same Drug Cost Less in Other Countries?
The answer seems to lie in government intervention. In countries like Pakistan and China, the respective governments have stepped in to negotiate with global drug makers. Their actions have made life-saving medicines like Risdiplam more affordable for their citizens. Now, the Indian Supreme Court is asking: Why can’t India do the same? It’s a fair question. In a country where medical expenses can already break families, access to rare disease treatment shouldn’t feel like an impossible dream.
A Turning Point for Indian Healthcare?
The upcoming hearing on April 8 could become a pivotal moment in Indian medical history. If Roche agrees to reduce the cost of Risdiplam in India, it could open the door for more affordable treatments for all rare diseases. It may even inspire new government policies focused on helping families afford life-saving drugs. More than a courtroom battle, this is about restoring hope and giving people a chance at a better life regardless of their income. It’s about compassion, justice, and recognizing healthcare as a basic right, not a privilege.
What Lies Ahead for Seba and Others Like Her?
For now, Seba has been allowed to reach out to the pharmaceutical companies herself, asking for the drug at a concessional price. The Court has also encouraged the Indian government to help her explore all possible options for support and funding.
Her struggle is no longer just personal it has become a symbol of hope for countless others who silently suffer. If her case leads to more humane pricing, Seba’s courage might save many more lives than just her own.
Disclaimer: This article is meant for informational purposes only and should not be considered medical or legal advice. For any personal medical decisions or legal concerns, please consult with qualified professionals.
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