Over the years, WHO has earned praise as well as criticism over how it has dealt with health crises. In 2016, for example, health systems and services continued to be inaccessible to at least 4 million of the 10 million people affected with tuberculosis. Civil society organisations that had been working with TB patients were particularly upset with the agency’s efforts to combat multidrug-resistant (MDR) tuberculosis.
There was a lack of trust and some dissatisfaction about the way WHO’s tuberculosis department had framed guidelines and it was an unfortunate reality that TB survivors and civil society representatives were not fully included in the process. Soumya remembers how WHO had tackled the situation. Dr Tedros instructed WHO officials to understand why some groups were angry. “Bring critics into the room. Get them to the table, make them talk and listen to the point that civil society voices are making. Then try and find a solution. Responding to constructive criticism can help engage both parties in a productive dialogue and lead to a win-win situation,” he had said, as she recalls.
Soumya was enthusiastic about the role of civil society and affected communities in ending tuberculosis. She soon got involved in meetings organised by WHO’s tuberculosis department. Civil society organisations and MDR-TB survivors were invited to Geneva for a meeting and detailed discussions were held with experts on the data used by WHO to frame TB guidelines. The stakeholders were also provided with the latest updates on the subject.
Over the years, these efforts by the WHO team, to increase the agency’s engagement with civil society and patient representatives went a long way in ensuring accountability. In December 2018, Dr Tereza Kasaeva, director of the global TB programme, WHO, spoke about the experience, recalling how heartening it had been to see countries taking the important step of setting up national accountability bodies, consistent with the WHO multi-sectoral accountability framework that had been developed after taking inputs from countries, partners and civil society. “The WHO-revamped civil society taskforce will continue to contribute to these efforts,” she had said.
In her highly acknowledged work on tuberculosis, Soumya gave a voice and platform to survivors of the disease. One such survivor was Nandita Venkatesan (28), a Mumbai-based journalist who survived TB twice and was subsequently involved with advocacy work.
In March 2018 The Lancet, one of the oldest and most respected peer-reviewed medical journals, announced that it would soon be forming a commission on tuberculosis. Dr Madhukar Pai, Canada research chair of epidemiology and global health at McGill University, encouraged Nandita to be part of the commission. Dr Pai is known for his research on improving the diagnosis and treatment of tuberculosis.
Nandita, who had suffered hearing loss due to the side effects of the kanamycin injection used to treat multidrug-resistant TB, agreed to Pai’s suggestion. During the commission’s meeting in New Delhi in 2018, she interacted with experts from the World Bank, WHO and the United Nations.
“That is when I first met Dr [Soumya] Swaminathan,” says Nandita. “She was extremely receptive to the concerns I had raised on behalf of women TB survivors during the commission meeting. I had also spoken there about how, due to medications, my menstrual cycle had stopped for a year and that I ended up thinking that my reproductive system was no longer functioning.”
Nandita, who had grown used to being referred to as a “bechari” or a “poor thing”, was unsure how Soumya would react. “Dr [Soumya] Swaminathan was not dismissive of my concerns,” she says.
When Nandita wrote to Soumya about her desire to speak at a high-level summit on tuberculosis at the UN later that year, the latter readily agreed and proposed her name as a speaker. She was keen that Nandita, who had come to represent the voice of women TB survivors, from the developing world, should be heard.
At the summit, Nandita spoke about her tryst with tuberculosis that began at the age of 17. She was dealing with intestinal TB that had not been diagnosed on time. The pill burden was high in 2007 and Nandita, who had never heard about the disease, had to take leave from college for two months. She had been instructed not to tell anyone about the disease due to the “stigma” around TB, even though in her case there was no risk of the disease passing on to others.
Four years later, Nandita had just completed her postgraduate studies in New Delhi and was looking forward to a job in the media industry when she was once again diagnosed with TB. This time around the infection was severe and a portion of her intestine was badly affected. Nandita was told she would need surgical intervention.
Despite the odds, Nandita remained positive and hoped she would get better after the surgery. However, what followed was nothing short of a nightmare. Nandita had to undergo six surgeries and spent around three months in hospital. She had to be wheeled into the emergency room several times as the bacteria had become extremely resistant. Being confined to an intensive care unit for half a month was not what Nandita had hoped for at the age of 23, a time when she would rather go to theatres and socialise with others.
But the worst was yet to come. “I could hear everything that day till I slept briefly for fifteen minutes. When I got up, there was silence,” Nandita recalls. Later, she would come to know that she had suffered 90 per cent hearing loss due to the adverse effects of kanamycin, an aminoglycoside antibiotic used to treat several bacterial infections.
Nandita had lost all hope. The ghungroos she lovingly wore at her Bharatanatyam dance sessions would hang from the wall in her room, swaying in the breeze. She would stare at them but was unable to hear them tinkle. It was as if someone had turned off the music in her life. She slipped into a long period of depression, was emotionally exhausted and troubled with feelings of guilt as her condition had led to immense grief among her family members. Leading a life of total dependence, Nandita had started developing suicidal tendencies. That’s when her Bharatanatyam teacher, Sugandhi Subramanian, called her and asked her to join the class again.
“My peers in the class were doing so well but I could not hear anything,” Nandita says. Determined to improve her performance in class, she somehow convinced herself to keep going. She started converting music into numbers, memorising the counts and aligning her steps accordingly. Then came the day when she performed without hearing anything. Finally, she could see a ray of hope and thus began her new journey, one that would help her get her smile back.
Her dance performance had gone viral on social media. Soon, there were journalists who wanted to share her story. Meanwhile, Nandita reached out to Dr Pai to learn more about the disease and was amazed by the extensive research done on the subject.
Soumya suggested that Nandita consider a cochlear implant to deal with her deafness. Nandita was however apprehensive. Her past experience in hospitals was weighing her down. Once again it was Soumya who encouraged Nandita to connect with Dr Mohan Kameshwaran, a noted otorhinolaryngologist and founder of the Madras ENT Research Foundation. The surgery was successful.
Nandita met Soumya’s family in Chennai after the operation. She had expressed interest in a master’s programme in public policy at Oxford and wanted to pursue it. Not only did Soumya encourage her to go ahead with the programme but also wrote a recommendation letter for her. “Soumya is keen on giving a platform to strong women in the health sector. She does things with a lot of grace,” says Nandita.
Excerpted with permission from At The Wheel of Research: An Exclusive Biography of Dr Soumya Swaminathan, Anuradha Mascarenhas, Bloomsbury India.