GUWAHATI: Families of children battling spinal muscular atrophy (SMA), a rare and debilitating genetic disorder, have welcomed a move by Indian pharmaceutical company Natco to manufacture a much more affordable generic version of Risdiplam, a drug currently sold at prohibitively high prices by global pharma giant Roche.
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Natco has announced it plans to price the drug at ₹15,900 per 60 mg bottle, compared to Roche’s price of over ₹2 lakh per bottle in India. This significant reduction could bring the annual cost of treatment down from ₹72 lakh to around ₹5 lakh, offering new hope to hundreds of families.
According to Natco’s statement titled “Legal Update Regarding Risdiplam Launch in India”, the pricing would make treatment accessible to a wider group of patients. However, the rollout hinges on an ongoing legal dispute: Roche has challenged a Delhi High Court single bench judgment from March 24 that denied its request to stop Natco from manufacturing the drug.
For SMA patients, particularly those weighing over 20 kg, the annual requirement is about 30 to 36 bottles of Risdiplam. If Natco’s version is allowed to hit the market, the financial burden could be reduced drastically without compromising on safety or efficacy, said a parent of an SMA child.
“The price drop will be a game changer. It can dramatically improve accessibility,” said the parent.
In comparison, Roche's Risdiplam is significantly cheaper in neighbouring countries — approximately ₹44,700 per bottle in China and ₹41,000 in Pakistan, according to an affidavit filed in the Supreme Court by SMA patient Seba PA. She highlighted the steep 80% price difference with what Roche currently charges in India.
A Yale University drug pricing expert estimated that the cost of producing Risdiplam locally could be as low as ₹3,000 per year, underscoring the potential of domestic manufacturing to radically lower expenses.
While the central government’s rare disease policy promises one-time aid of up to ₹50 lakh, this barely covers a year’s treatment at Roche’s current price. In contrast, ₹50 lakh could support a patient’s treatment for nearly a decade if Natco’s version is approved and made available.
Currently, over 750 SMA patients are registered with the government’s rare disease portal, and Cure SMA, a parent-led trust, has about 1,800 registered patients. However, very few have received any financial assistance. Cure SMA revealed in a court filing that only two to three patients have been aided so far.
Between 2018 and 2021, the government spent just ₹7 crore of the ₹200 crore budgeted for rare disease expenses.
If the government were to provide ₹50 lakh each to 1,800 SMA patients at current prices, the total cost would reach ₹90,000 crore — equal to the entire health ministry budget for 2024.
Public health experts argue that the only sustainable path is for the government to actively support domestic production and bulk procurement of rare disease drugs. This approach, they say, would not only reduce costs but also ensure that financial aid actually translates into access to treatment.