India's Public Health Platform
India's Public Health Platform
Science is incomplete without the voices of the people that it impacts the most.
Amid the statistics, policies, and technical jargon, we often lose the real picture of Antimicrobial Resistance (AMR). AMR occurs when microbes like bacteria, viruses, fungi, and parasites evolve and no longer respond to the drugs designed to kill them, making infections caused by them harder to treat and increasing the risk of disease spread, severe illness, and death. Behind the science are personal stories about people navigating the complexities of this century's most pressing global health crisis.
During World Antimicrobial Awareness Week (WAAW 2024), I had the privilege of speaking with Nandita Venkatesan, a two-time tuberculosis survivor whose grueling AMR journey reminds us of the lived realities of this issue.
Nandita's story is one of remarkable strength and resilience. After years of battling multi-drug-resistant tuberculosis (MDR-TB), she turned her struggle into a successful campaign to champion for patients and affordable TB medications. Her experience offers valuable lessons on confronting AMR head-on—not just as a health crisis, but as a deeply personal and often life-changing challenge.
A journey through pain, uncertainty, and resilience
At just 17, Nandita was diagnosed with intestinal TB—a form of the disease that affects the digestive system, causing her severe abdominal pain, weight loss, and persistent digestive issues. It was her first year of college, a time filled with dreams of independence and growth. Instead, she faced a grueling 15-month treatment that left her grappling with the side effects of antibiotics, including nausea, weight loss, and fatigue.
“Dealing with TB as a 17- or 18-year-old girl, who’s starting to become independent in life, was a very challenging thing at that point" she reflected.
But the disease wasn't done with her yet. Six years later, it resurfaced as a drug-resistant strain. “It was obviously a huge shock for me. At that time, I was 23 years old” she recalled. This time, the treatment was far more intense. It included six surgeries, prolonged hospitalizations, and a course of kanamycin injections—a second-line TB medication known for its severe side effects.
“I woke up into pin-drop silence,” Nandita said, describing the moment she realised she had lost her hearing, just two days after her 24th birthday. This life-altering disability was caused by the very medication meant to save her life—a side effect she and her family were not warned about. “We were not even informed beforehand that the Kanamycin injections that were given could have such a serious side effect,” she added.
Systemic gaps in AMR management
Nandita’s experiences reflect broader issues that affect AMR management, especially in low- and middle-income countries like India. The reliance on older, harmful antibiotics such as Kanamycin highlights the stagnation in TB treatment innovation. “Kanamycin is an old drug. It’s effective but comes with a heavy price in terms of side effects,” she explained.
What really struck her was the sharp contrast with the swift advancements seen during the COVID-19 pandemic. “In less than two years, we saw breakthroughs in diagnostics and treatments for COVID-19. Why can’t we see the same urgency for TB?”
Her point is undeniably valid. Diseases such as TB, which mainly impact poorer countries, frequently get overlooked in global health priorities. “It’s as if the world moved on after the global north overcame TB,” she said, her frustration evident.
Nandita also emphasised the critical role of accurate and timely diagnostics in effectively treating infections and preventing drug resistance. “Diagnosis is very important and it's critically linked to AMR because unless you diagnose the disease correctly, you don't know what kind of medication you have to administer,” she noted.
The fight for affordable medicines
Nandita has since taken on the mantle of advocating for TB and AMR. One of Nandita's most impactful recent efforts was her involvement in opposing Johnson & Johnson's secondary patent on Bedaquiline, a vital drug for treating multidrug-resistant tuberculosis in children and adolescents.
Working alongside organisations like Médecins Sans Frontières, she helped challenge and ultimately overturn the patent extension in 2023. This move allowed generic manufacturers to produce the medication at a fraction of the original cost.
While she was appreciative of pharmaceutical companies for developing life-saving drugs, she was equally critical of their ways of extending patents through tactics like ‘evergreening’ to maintain monopolies and keep drug prices high, thereby limiting access for those who need them most.
“We felt that this four-year extension was a tactic used by several pharmaceutical companies called evergreening” she explained. “We challenged them on the grounds that this could qualify as evergreening.”
By challenging the patent extension, petitioners like Nandita aimed to balance rewarding innovation and meeting public health needs. Pharmaceutical companies need an incentive to produce drugs, but not at the cost of human lives.
“Today, patients can access Bedaquiline much more easily,” she said. This victory not only improved availability but also sent a strong message about the necessity of affordable healthcare, particularly for countries like ours with massive TB burden.
For Nandita, the legal battle was deeply personal. “I know what it's like to fight a disease with limited resources. Making these drugs affordable was about giving people a fighting chance,” she said.
The healing power of arts
Amidst the whirlwind of surgeries, hospital stays, and her advocacy efforts, Nandita discovered an unexpected source of strength: Bharatanatyam dance. She had been trained in this classical art form since childhood and absolutely enjoyed it, but feared that her hearing loss would sever her connection to it.
“When I lost my hearing, I thought dancing was over for me,” she recalled. “But then I learned to convert music into numerical rhythms.” Determined not to let her passion fade, she adapted her practice and even returned to the stage.
“Dance gave me hope when everything else felt bleak. It reminded me that I am more than my illness.” For Nandita, dance became a lifeline—a way to reclaim her identity and find joy amid the pain and struggles.
Lessons for healthcare and society
Nandita’s story offers critical lessons for improving AMR management in our country by making more patient-centric. She stressed the need for better communication between doctors and patients, especially about potential side effects. “It’s not just about prescribing medication; it’s about empowering patients with information.”
She also underscored the importance of investing in diagnostics. “During COVID-19, we saw rapid strides in point-of-care diagnostics. Why can’t we apply the same thinking to TB and other AMR-related diseases?”
Nandita also highlighted the stigma surrounding diseases like TB and drug-resistant infections, which often discourages patients from seeking help or sharing their experiences. “You get asked a lot of questions—how did you get the disease? Why did you not do something to avert it? No one has answers to these questions,” she said.
She stressed the need for survivor networks, which can provide support and amplify patient voices. “I do think it’s important that more people come out and speak about it. That’s when we’ll start breaking the glass ceiling.”
Moving forward with a mission
When I asked Nandita what keeps her going, her answer was humbling: “I felt like I went through something incredibly difficult, but if there’s a way I can prevent it for others, that’s my intention.” Her experience helped her look at the system-level challenges in not just TB care but health care more broadly and now wishes to work in the public health domain.
By the end of our conversation, I felt as if I were speaking with an AMR expert. But who better than a patient and survivor to truly comprehend the disease, its treatment, and the lived experience of AMR?
Nandita’s story is a powerful reminder that tackling AMR requires more than scientific or medical discourse. It calls for listening to the people who experience it firsthand—their struggles, insights, and triumphs.
As we continue to confront the complexities of AMR, let us ensure that voices like Nandita’s remain at the forefront. Their stories remind us of the urgency and humanity behind the fight against AMR.
Edited by Parth Sharma.
Image by Janvi Bokoliya.
