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Indian Express
09-06-2025
- Health
- Indian Express
High costs of life-saving drugs leave patients of rare diseases in the lurch: Will their crusade for Indian variants win?
For Seba P A, 26, from Kerala, the cost of breathing easy, moving around and enduring fewer bouts of infection comes at a steep price — nearly Rs 18 lakh per month. For long, she had managed with the Rs 50 lakh government grant under the national policy of rare diseases, one of which — Spinal Muscular Atrophy — she is battling. Now she is on a crusade to make life-saving drugs, currently under patents, affordable for persons suffering from rare diseases. Suffering from Spinal Muscular Atrophy (SMA), a rare disease that progressively affects muscle functions, her condition can be managed with Risdiplam. Developed by Swiss pharma giant Roche, one bottle of Risdiplam costs around Rs 6 lakh in India — something her taxi driver father cannot afford. In a bid to make the life-altering medicine affordable for SMA patients like herself, Seba had in December 2023 filed a petition in the Kerala High Court urging the government to invoke the compulsory licensing clause under Section 84 of the Indian Patents Act, 1970. This allows the Indian government to grant someone other than the patent holder the right to make the medicine if a product or process is nationally unavailable or overpriced. Roche holds the patent for Risdiplam till May 2035. Her case is now being heard in the Supreme Court. 'If other companies start manufacturing the drug, the prices are likely to plummet,' says Seba. Like her, patients suffering from rare diseases, who need life-long therapy, have been urging the government to invoke the compulsory licensing clause. WHY PATIENTS OF RARE DISEASES RAN OUT OF OPTIONS Two years ago, Seba's family had applied for financial aid under the Centre's National Policy for Rare Diseases, 2021, which had identified 1,000 patients, including Seba, for a one-time financial assistance of Rs 50 lakh each. 'When I was taking Risdiplam, my health was stable. I was able to speak and sing. However, the funds got exhausted in mid-February. Since then, I have already had two bouts of infections and have been confined to bed,' Seba, who loves singing and painting, tells The Indian Express. Though she is back on Risdiplam, being provided by Roche free of cost for a year while the case is on, it continues to be out of reach to other SMA patients. The mother of a 14-year-old boy from Bengaluru has been struggling to obtain medicine to treat his cystic fibrosis (CF), a genetic condition that affects cells that produce mucus, sweat and digestive juices, making them thick and sticky, clogging up lungs and the digestive system. In 2019, Trikafta, a three-drug combination sold by US-based Vertex, was approved by the US Food and Drug Administration (FDA) for CF treatment. 'Importing a three-month supply costs Rs 70 lakh. An Argentina company manufactures a slightly cheaper version that costs around Rs 21 lakh for a three-month supply,' she says. She is one of the petitioners urging the government to grant a compulsory license for the medicine. In an attempt to get the medicine from Argentina, the mother scours Facebook for Indians living there and requests them to get the medicine when they come home. 'I split the tablets to make them last at least six months. If Indian companies are given compulsory licences, I might be able to afford medicines for my son,' she says. WHAT'S THE STATUS OF COMPULSORY LICENSING CLAUSE? Despite the exorbitant cost of drugs used to manage rare diseases, India's compulsory licensing clause has been used just once in 20 years. 'Only one private company got a compulsory license once,' says Anand Grover, a senior lawyer who works on such patent cases, referring to the New Delhi-based Natco Pharma, which secured the permit to manufacture Nexavar, a cancer drug made by German multinational Bayer, in 2012. Since then, three Indian companies have unsuccessfully applied for compulsory licences — BDR Pharmaceuticals for Dasatinib (for leukemia), Lee Pharma for Sitagliptin (for diabetes), and Emcure Pharmaceuticals for Trastuzumab (for breast cancer), says Sneha Sharma, a partner at Sujata Chaudhri IP Attorneys. ROCHE VS NATCO In 2024, Roche Pharmaceuticals had filed a petition to get an injunction, claiming that Natco Pharmaceutical was in the process of launching a generic version of Risdiplam. Though its injunction was denied by the Delhi High Court in March 2025, the Swiss drug-maker has filed an appeal. The Division Bench has heard the arguments in the case and is now awaiting written statements from both parties. Meanwhile, Natco announced that if it is allowed to manufacture and market the generic version of Risdiplam, it will sell it for just Rs 15,900 per bottle (against Roche's Rs 6 lakh per bottle). Though Roche's assistance programme provides five bottles at the cost of two, patients still end up spending nearly Rs 30 lakh annually. A generic version of Risdiplam would mean that the government's Rs 50-lakh aid will last almost nine years instead of just a few months for SMA patients. Risdiplam is sold for around $500 (around Rs 42,000) per bottle in China and Pakistan. 'Risdiplam costs less in China and Pakistan where prices were negotiated with the company. Since that did not happen in India, a simple solution would be to issue a compulsory license to Natco,' says Grover. He also challenged the narrative put forth by the Swiss drug-maker, which said that a drug's exorbitant prices were meant to cover the 'high costs' of research and development (R & D). In its suit against Natco, Roche had said that it takes a company nearly 10-15 years and an estimated $2.6 billion (nearly Rs 260 crore) to bring a successful drug to the market. The company had claimed that only one in nearly 5,000 or 10,000 drugs in the research pipeline and around 12% of those in clinical trials get approved. 'Many drugs are, in fact, developed by smaller companies that are acquired by bigger ones and taken to clinical trials. Big companies often hold these patents despite not bearing initial costs of developing several candidate drugs. The figures these companies have been giving out for years are an exaggeration. Which is why we ask for actual costs the companies incur on drug R & D,' says Grover. He says studies have shown that the cost of developing Risdiplam would, at most, be $150 million, a figure that has not yet been contested by the company. HOW PHARMA MAJORS PROLONG PATENT CONTROL Pharma giants find loopholes to prolong their control over a drug. When it comes to Trikafta, the CF drug, Vertex Pharmaceuticals already holds the patent for two of these medicines in India while an application for the third is in process. 'In a blatant abuse of its monopoly, Vertex has filed and obtained multiple patents in India, thus having monopoly rights on various CFTR modulators (a class of medications designed for individuals with CF). But it has not bothered to register the medicine in India,' states a 2024 petition by CF patients in the Karnataka High Court. Sharma says a compulsory licence may also be issued if a patent holder has not worked the patent in over three years. PATENTING PHARMACEUTICALS IN INDIA When the country's new patent law was brought out in the 1970s, the government created a very important provision — it allowed for only process patenting when it came to pharmaceuticals. 'After the British left, drugs in India were very costly. A committee set up by (then PM) Mrs (Indira) Gandhi recommended dropping product patenting for pharmaceuticals. If a product is patented, you cannot do anything. But if a process is patented, you can legally make a similar drug using another process. That is what was done under the new Patent Act that came into force in 1972,' says Grover. This decision was key to the generic manufacturing of pharmaceuticals in India, earning the country the moniker of the 'pharmacy of the world.' Meanwhile, the US, which wanted to create a monopoly for itself, forced the world to accept the Trade-Related Aspects of Intellectual Property Rights (TRIPS) Agreement, which came into effect on January 1, 1995. While countries like Brazil, Mexico and India initially formed a block against TRIPS, threats of sanctions forced them to toe the line. India was given time till 2005 to implement provisions similar to the ones in the US — ensuring product patents and extending patent period from seven to 20 years, explains Grover. In fact, India's Patent Act, which allowed only the process to be patented, became the reason why Indian drug-maker Cipla could establish itself as the 'Robin Hood' of pharmaceuticals. In 2001, the company started selling a cocktail of antiretrovirals (medicines used to manage HIV) for less than $1 a day, driving down the prices of the medication across the world. Grover says, '(Despite TRIPS), we still tried to maintain some provisions that would help our people. Our law does not allow extending patents simply by changing the medicine's form or replacing some salts (a process called ever-greening of patents) unless there is a significant change in its efficacy. Our law also allows for both pre and post-grant opposition.' Anonna Dutt is a Principal Correspondent who writes primarily on health at the Indian Express. She reports on myriad topics ranging from the growing burden of non-communicable diseases such as diabetes and hypertension to the problems with pervasive infectious conditions. She reported on the government's management of the Covid-19 pandemic and closely followed the vaccination programme. Her stories have resulted in the city government investing in high-end tests for the poor and acknowledging errors in their official reports. Dutt also takes a keen interest in the country's space programme and has written on key missions like Chandrayaan 2 and 3, Aditya L1, and Gaganyaan. She was among the first batch of eleven media fellows with RBM Partnership to End Malaria. She was also selected to participate in the short-term programme on early childhood reporting at Columbia University's Dart Centre. Dutt has a Bachelor's Degree from the Symbiosis Institute of Media and Communication, Pune and a PG Diploma from the Asian College of Journalism, Chennai. She started her reporting career with the Hindustan Times. When not at work, she tries to appease the Duolingo owl with her French skills and sometimes takes to the dance floor. ... Read More
Mint
22-05-2025
- Automotive
- Mint
Masterclass: The professor behind the engines of India's flying future
Chennai: On an October evening in 2016, a professor from IIT Madras came across a talk by Tony Seba, a Silicon Valley entrepreneur. In the video, Seba showed two remarkable pictures. The first one was from 1900—an Easter Parade in New York City's Fifth Avenue. In the middle of the street, crowded with horse-drawn carriages, was a car. One could barely see it. He next showed a picture from the same parade 13 years later. 'Where is the horse?" Seba asked. Fifth Avenue, now crowded with cars, just had one horse carriage. Seba went on to make a few predictions. All cars will become electrified; by 2020, the cost of an electric car will be about the same as that of an internal combustion engine (ICE)-powered car; by 2030, everybody will start using electric cars and we will enter the era of driverless vehicles. 'I finished watching the video and wondered what am I doing here building the world's largest combustion centre," Satyanarayanan Chakravarthy, the professor, says. Back then, Chakravarthy was working on establishing the National Centre for Combustion Research and Development at IIT Madras. That video encounter would eventually spark an incredible journey for the professor, from academia to entrepreneurship. It planted the first seed of what seemed an almost improbable idea nine years ago—building air taxis in India. Rockets and satellites This writer took a 36 km journey with Chakravarthy, from the IIT Madras campus in Chennai, where he resides, to the institute's satellite campus, in Thaiyur. It is 8:15 am on a hot Monday morning. Dressed in a white shirt with red checkered lines, the professor pops open his steel tiffin box for breakfast in the car, an everyday ritual. He scoops a spoonful of boiled chickpeas, and then pauses mid-bite, to recollect what happened after he heard Seba's talk. That night, he spent time with a colleague, walking the lush green campus of IIT Madras, telling him that they had to build electric planes. If cars can become electric, it's only a matter of time before planes do, he reasoned. The question in his mind was time. Could electric planes become a reality before he retires in 2034? 'I had a good 18 years ahead. I could pretend that it's not going to happen and continue to work in combustion. But I decided I can't be living in denial for about 18 years. Instead, I should actually jump on the bandwagon and be the driver of change," Chakravarthy says. The ePlane Co. was incorporated two years later, with a grand vision—to alleviate global traffic congestion. Founded by the professor and incubated in IIT Madras, the company is now testing a cargo plane for metro cities. The air taxi is in the engineering phase with regulatory audits expected to begin this fiscal year. That's not the only company Chakravarthy started. He collaborated, advised or co-founded a handful of other deep-tech businesses—AgniKul Cosmos, Aerostrovilos Energy, GalaxEye, TuTr Hyperloop, and X2Fuels. Agnikul Cosmos is building small rockets that can launch satellites into space quickly and at a low cost; Aerostrovilos is developing compact micro gas turbines, which are small, jet engine-like machines that generate electricity; GalaxEye is building satellites for earth observation; TuTr Hyperloop is aiming to develop an ultra high-speed ground transportation system while X2Fuels is working on turning waste into clean fuel and chemicals, helping reduce pollution. If these companies become successful businesses, going ahead, they could shape the future of space, transport, farming, and energy. Social guy Growing up in Chennai, professor Chakravarthy taught himself to play the violin. He also loved to sketch in his spare time. After school, Chakravarthy did not get admission into an IIT right away; he enrolled himself in a private engineering college in Chennai. His extroverted nature pulled him into college life—taking on internships, leading initiatives, and even running the hostel magazine during elections. Wherever he got involved, his energy and leadership stood out. 'I am a very social guy. My room was the place where all the guys who did not pay attention in class congregated," he remembers. He then prepared for the joint entrance examination, one of India's most competitive tests for admission to top engineering institutions, with more seriousness. In 1987, he managed to secure the 835th rank. Aerospace studies, at IIT Madras, was on the menu. 'I was not interested in coding and computers. I wanted to do stuff with my hands and build things. That is the reason why I picked aerospace over chemical, metallurgy or other options," Chakravarthy says. After his bachelors in aerospace engineering, he went on to pursue higher studies at the Georgia Institute of Technology in the US. Following a postdoctoral stint, he returned to join IIT Madras as a professor in 1997. Mr Cool With half a dozen companies to advise now, the professor is a busy man. He spends two hours advising startups he's involved with; three hours teaching at IIT Madras, and the rest of his time leading The ePlane Co. as both its chief executive officer and the chief technology officer. But that's not all—Chakravarthy is a much sought after speaker and does the rounds of tech conferences. He never loses his cool, despite wearing many hats, his colleagues vouch. 'We have around 20 teams, from preliminary design to detailed design, and he (Chakravarthy) has to check and advise each one of them," Rajasekar Vijayakumar, head of manufacturing at The ePlane Co., says. 'But, he maintains his cool throughout the day." The professor mostly joins deeptech startups at their formative stage, helping shape their technical designs, making the necessary connections, and at times, even funding them. Nonetheless, he is not involved in the daily operations of most of these companies. For instance, Chakravarthy played a crucial role in mentoring Srinath Ravichandran and Moin SPM, co-founders of Agnikul. The duo approached him through multiple contacts in the summer of 2017 and sought guidance on building rockets. 'His extensive network within the Isro community helped us connect with some of our very important advisors. Another thing is that when you are a young company, you need validation about what you are building and the professor's help in the initial months was critical," Ravichandran tells this writer. 'He is the person who suggested that we should make single piece rocket engines. He is also the person who pushed us to reach a point where the entire rocket engine is 3D printed," he adds. In May last year, Agnikul test-launched its 3D printed semi-cryogenic rocket, a feat that received a congratulatory message from the Prime Minister, Narendra Modi. 'All startups have their own founders and I do not step on their toes. They expect me to only be an advisor," Chakravarthy says. Uber in the sky The realization of what it can become was a magical moment for Vinod Shankar, founder at venture capital firm Java Capital and an early investor in The ePlane Co. Shankar, who has a farmhouse near Mysuru, noted with excitement that when the ePlane taxis happen, the hope in the family is that they can go from Bengaluru to the farm in 15-20 minutes. 'Why do you need to live in Bengaluru then? It's an urban revolution as you don't need to live in dense cities," he says. Before that magical moment can happen, the company has to solve hard engineering problems. Technically, it is building what is known as an electric-powered compact aircraft or eVTOL (electric vertical take-off and landing). These planes can take off and land vertically, like a helicopter and don't need a long runway. Unlike helicopters, the three-seater aircraft (which would include the pilot's) has wings that give a lift when it moves forward and reduces the energy needed to stay in the air. Drones or helicopters, in comparison, rely only on rotors. The aircraft would look like a cross between a drone and a small plane. The company is currently building its first prototype, with test flights scheduled for August. This will be followed by additional prototypes, each refined and flight-tested as part of the certification process. It aims to commercialize the air taxis by 2027. While the commute via air taxis would cut short time, they might, in fact, become cheaper than Uber one day, claims the professor. The company has been mapping distance and costs comparing it with the cab aggregator. 'Uber had a model by which they used existing cars. But we don't have existing assets in our case. So, it will take a couple of years for me to ramp up to the level, but the point is, it's doable," Chakravarthy says. Initially, commercialization could begin with the aircraft operating as air ambulance. The ePlane Co. has raised about $21.5 million so far. Apart from Java Capital, investors include Speciale Invest and 3one4 Capital. The fascinating thing is that Chakravarthy is an aerospace guy—propulsion and combustion were his specialties, says Sonal Saldanha, vice president at 3one4 Capital. 'He was at the centre for combustion research. Electric vehicles need to be anything but combustible. I say this as a joke, but the point is that he was willing to take major calls on his career trajectory based on where he saw an opportunity, regardless of where he's spent time building an identity," Saldanha adds. Investors say the professor is savvy when it comes to raising money—an essential skill when it comes to building deep tech companies that can mop up huge capital. 'Fundraising is one of the toughest things that founders have to face, but he's naturally equipped and has been doing a great job at this for a long time now," Saldanha says. Further fund raise for the The ePlane Co. would test the professor—according to investors in the know, air taxis would require humongous capital for it to become a reality. Of the six companies he is part of, AgniKul Cosmos has raised the most thus far, going by data from Tracxn—$42 million. Jargons for outsiders None of the startups the professor advises, or is a co-founder at, have generated revenue at this point. GalaxEye could start generating revenue from next year, he says, while The ePlane Co. and AgniKul Cosmos could start making money towards the end of next year. The ePlane Co., meanwhile, is beginning to clock some 'very small revenue" with the drones a subsidiary of the company builds. Chakravarthy, meanwhile, remains an academic at heart even when he steps outside the classroom and into the fast-paced world of startups. He says he doesn't get enamoured by equity, valuation and exits. They are just jargons to be used for the outside world. What drives him, personally, is the daily grind—16-hour days but one step at a time. His only pause is a couple of quiet hours on Sunday, when he unwinds. Shankar of Java Capital points out that he has not come across anyone from academics who is as energetic as Chakravarthy. 'If anybody can do this in India, it's only Satya. Nobody is going to take that level of risk," he says.
CairoScene
23-04-2025
- CairoScene
Sisters of the Nile: Sia & Seba Are Egypt's Newest Dahabeyas
These two graceful Dahabeyas on the Nile offer a slow, soulful way to experience Egypt—complete with pool decks, spa rooms, and stories carried by the wind. There is a particular kind of rhythm to the Nile, a soft whispering of ancient stories through the timeless ebb of its waters, a deep humming that settles into your chest, as if the river is reminding you—gently but firmly—that it was here long before you, and it will be here long after. And somewhere between Luxor and Aswan, where time seems to melt into those very same magical waters, two sister Dahabeyas—Sia and Seba—leisurely drift past lush banana groves and towering ancient temples, sailing in the company of the Pharaohs and carving out their own place in a river that has seen civilizations rise and fall. Owned and run by three generations of the El Wassif family, Sia and Seba—collectively known as Mazaj Dahabeyas—are more than mere sailboats. They are living embodiments of the Nile's past and present, reflections of history, and messengers of love letters to Egypt, hand-delivered on the wind. Sia, the Soul of the Nile The first of the two Dahabeyas in the Mazaj family, Sia feels like drifting into the Nile's daydream. From the moment you cross onto its deck—past the glinting brass lanterns and into the soft embrace of polished wood, linen-draped daybeds, and the scent of citrus—you're no longer just a passenger. You're part of the river's lullaby. The gentle hum of the Nile becomes your soundtrack, setting the pace for slow sips, long glances at the horizon, and conversations that stretch into golden hour. With nine spacious cabins—including one luxury cabin, six deluxe cabins, and two Royal Suites so expansive they might make you forget you're on a boat at all—Sia was clearly designed for lingering. Each room hums with quiet sophistication—smart panels at your fingertips, Nespresso ready on command, high-thread-count everything—and a welcome box that greets you like an old friend. Up top, the sun deck beckons with a shimmering pool that reflects the sky with near-arrogant clarity, and the bar lounge, fringed with rattan chairs, offers panoramic views that blur the line between river and horizon. Somewhere near the stern, the spa room—the kind that smells faintly of eucalyptus and quiet—is a sanctuary within a sanctuary. Here, skilled hands soothe away any remaining tension, as the river gently rocks you back into stillness. Everything here, from the all-day fresh juices to the mobile app that handles every request with a whisper, is designed to slow time down to your own rhythm. Seba, the Soft-Spoken Sister If Sia is the Nile's socialite, then Seba is its quieter twin—the introspective soul wrapped in linen and silence. With a more intimate layout and just five cabins on board—one Royal Suite, one luxury cabin, and three deluxe cabins—Seba feels less like a boat and more like a whispered secret meant only for you. Each room is wrapped in sun-washed neutrals and handmade details that speak softly of luxury: high-thread-count bedding, pillowy duvets, and bath products that smell like time slowing down. You won't find extravagance shouting here—just thoughtful touches that make you feel held. This is a place for barefoot mornings on the deck, eyes still heavy with sleep, as the Nile unfurls beside you in hushed silver light. A place where books are read slowly, meals are lingered over, and hours pass unnoticed between the flapping of canvas sails and the occasional birdcall overhead. Evenings on Seba are their own kind of spell: golden light stretching across the sundeck, soft music echoing from the bar lounge, and stars that appear as if summoned just for you. And if the outside world calls, high-speed Wi-Fi and smart cabins keep you tethered—just enough. But here, it's the serenity that stays with you. A Journey Measured in Moments In the end, a journey aboard a Mazaj Dahabeya isn't measured in temples visited or kilometers sailed. It's felt in the hush between moments, in the way the wind plays the sails like an instrument, in the silence that says more than any guidebook ever could. You don't disembark so much as wake from a dream—one where time slowed, the world softened, and the river whispered just to you. And long after you've returned to the tug of calendars and unanswered emails, some part of you will still be sailing—rocking gently to the rhythm of the Nile. Some places don't ask to be remembered. They simply become a part of you.
