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Supreme court Questions Disparity in SMA Drug Prices: A Global health Equity Issue
April 5, 2025
The high cost of life-saving medications continues to be a important barrier for families affected by rare diseases. A recent case in India highlights the stark disparities in drug pricing across different countries, raising questions about pharmaceutical company practices and government responsibilities in ensuring equitable access to treatment.
The Case of Risdiplam and Spinal Muscular Atrophy
Spinal Muscular Atrophy (SMA) is a genetic disorder that affects motor neurons, leading to muscle weakness and atrophy. Without treatment, it can be fatal, especially in infants. Risdiplam (Evrysdi), manufactured by Roche, is an oral medication that has shown promising results in treating SMA. However, its high cost puts it out of reach for many families, even in developed nations like the U.S., where insurance coverage and patient assistance programs are crucial.
In August 2023, the Supreme Court of India took up the case of a 24-year-old SMA patient, Seba from Kerala, after a petition was filed questioning the exorbitant price of Risdiplam in India compared to other countries.Advocate Anand Grover,representing seba,pointed out the significant price difference,arguing that if the drug could be sold at a lower price in Pakistan and China,it could be similarly priced in India.
“Price of the medicine for SMA patients is available at a cheaper price in Pakistan and china as of intervention of govts of those countries. Why can’t Indian govt negotiate with the manufacturer to bring the price down or produce it as a generic drug to reduce the exorbitant cost of treatment,”
Anand Grover,Advocate
The court issued a notice to Roche and directed the Indian government to explain its position on making the drug more affordable. The urgency of the matter was underscored by the potential to save many SMA patients from premature death.
The price disparities are staggering:
| country | Price per Bottle (Approximate) |
|---|---|
| India | Rs 6.2 lakh (approx. $7,500 USD) |
| Pakistan | Rs 41,000 (approx. $500 USD) |
| China | Rs 44,692 (approx. $540 USD) |
These figures highlight the complex interplay of factors that determine drug prices, including government negotiations, local manufacturing, and intellectual property rights.
The U.S. Context: A Similar Struggle
While the Indian case focuses on disparities between developing nations,the issue of high drug prices is a pressing concern in the United States as well. The U.S. has one of the highest drug prices in the world, impacting not only individuals with rare diseases but also those with common conditions like diabetes and heart disease.
The introduction of the Inflation Reduction Act in 2022 was a step towards lowering prescription drug costs for Medicare recipients, allowing Medicare to negotiate prices for some high-cost drugs. Though, these negotiations are limited and don’t address the underlying issues of pharmaceutical pricing power and the complexities of the U.S. healthcare system.
For families in the U.S. dealing with SMA, the cost of Risdiplam, even with insurance, can be substantial. Copays, deductibles, and potential lifetime limits on insurance coverage can create significant financial burdens. Patient advocacy groups like Cure SMA play a vital role in providing resources, support, and advocating for affordable access to treatment.
Potential Solutions and Future Directions
Addressing the global disparity in drug prices requires a multi-faceted approach:
- Government Negotiation: As seen in Pakistan and China, government intervention can considerably lower drug prices. In the U.S., expanding the scope of the Inflation Reduction Act to allow broader negotiation could lead to cost savings.
- Generic Manufacturing: Encouraging the production of generic versions of essential medicines can drive down prices. Though, this requires addressing intellectual property rights and
What is the role of patient advocacy groups like Cure SMA in addressing global disparities in SMA drug pricing?
Interview: Dr. Evelyn Reed on Global SMA Drug Pricing Disparities
April 5, 2025
Introduction
Aris Folley: Welcome, Dr. Reed. It’s a pleasure to have you with us today to discuss the critical issue of global disparities in Spinal Muscular Atrophy (SMA) drug pricing, particularly in light of the recent Supreme Court case in India. For our audience, Dr. Reed is a leading expert in pharmaceutical economics and policy, with extensive experiance analyzing the accessibility of life-saving medications.
Dr. Evelyn Reed: Thank you for having me.It’s a vital conversation to be having.
The Price of SMA Treatment: A Global Viewpoint
Aris Folley: Let’s start with the basics.We’re seeing meaningful price differences for SMA treatments like Risdiplam, for example, with the cost in India being drastically higher than in countries like Pakistan and China. can you shed some light on the key factors driving these price differentials?
Dr. Evelyn Reed: Absolutely. Several factors contribute to the variance. One major aspect is government negotiation power. Countries like Pakistan and China have been accomplished in negotiating lower prices with pharmaceutical companies, a strategy that India is now exploring. Another crucial element is the presence of generic competition. until there’s competition the price of treatment is often dictated by the manufacturer.
The US Context and Impact of the Inflation Reduction Act
Aris Folley: The U.S. also faces challenges with high drug prices, despite the Inflation Reduction Act. How has this act impacted the situation,and what more needs to be done?
Dr. Evelyn Reed: The Inflation Reduction Act was a step in the right direction, particularly for Medicare recipients. Tho, it’s limited. Allowing Medicare to negotiate for a wider range of drugs is critical, and there is still a need for mechanisms to address the underlying power dynamics in the pharmaceutical market. Copays and deductibles, especially with specialty drugs and complex conditions such as with SMA, still create a substantial burden.
Ethical considerations and Patient Advocacy
Aris Folley: The price discrepancies we’ve discussed raise significant ethical questions. How do we balance the need for pharmaceutical companies to recoup their investment with the moral imperative of ensuring access to life-saving treatments?
Dr. Evelyn Reed: This is the core of the issue. Profit motives are crucial, yet when prices put treatments out of reach, it violates the right to health. Transparent pricing models, government subsidies, and stronger patient advocacy are all vital. Patient advocacy groups, such as Cure SMA, play a crucial role in ensuring families receive the support and resources they need.
Looking Ahead: Potential Solutions
Aris Folley: What are some of the most promising solutions that might help narrow these price gaps and ensure equitable access to SMA treatments globally?
Dr. Evelyn Reed: beyond government negotiation and encouraging generic production, exploring international collaborations to pool purchasing power could be a game-changer. Moreover, intellectual property rights, which impact generic manufacturing, will need continued reform.This can promote affordability and accessibility for all patients. greater transparency from pharmaceutical companies on the cost of research and growth is essential.
A Thought-Provoking Question
Aris Folley: Dr. Reed, what’s one thing, in your opinion, that the general public, and our readers, can do to influence this issue, moving toward a system that prioritizes both innovation and affordability?
Dr. Evelyn Reed: I would say, stay informed. The more people understand the complexities of drug pricing, the better equipped they are to advocate for change. Engage with your elected officials, support patient advocacy groups, and demand transparency from pharmaceutical companies.What is the one thing you would do?
Aris Folley: Dr. Reed, thank you so much for your insights. It’s been a pleasure.
Dr. Evelyn Reed: My pleasure. Thank you.
