As we grapple with the possible pandemic of the novel coronavirus, it might be a good time to look at another war that has been raging in many corners of the world, against an ancient infectious disease. Tuberculosis killed 1.5 million people worldwide in 2018, according to the World Health Organization, 410,000 of them in India. Containing it is monumental work, requiring both medical innovations and cultural insights. This is a story of how it is being tackled in Kangra District, a scenic valley in the foothills of the Indian Himalayas.
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Every day, Sapna Kumari goes to the homes of six tuberculosis patients in Tripal, her village in the Indian Himalayas, to make sure they are taking their medicines. She calls ahead to remind them to eat something, as the drugs they are on should not be taken on an empty stomach. She encourages them to persist through the side effects — nausea, extreme fatigue, and dizziness — and not give up midway through the treatment.
The recent news that a vaccine against tuberculosis may be on the horizon is cause for optimism for the future, but for now, the footsoldiers in India’s war against TB tend to each affected patient one by one.
“It makes their stool turn red,” Kumari said. “I reassure them that’s okay.” She also doles out advice on folk remedies. “Sometimes they feel very hot due to the medicine,” she said. “We tell them to eat amla (Indian gooseberry), to eat cool things when they are hot.”
As India works towards its goal of eradicating TB by 2025, it is employing one of its biggest assets: human power. Kumari is one of thousands of field workers deployed as part of India’s Revised National TB Control Program (RNTCP), the national effort to tackle TB.
One of humanity’s ancient diseases, TB continues to exact a terrible toll on India. 410,000 people died of TB in 2018 in India, which has more than a quarter of the world’s active TB cases. All that premature death costs the country about $32 billion a year, according to the World Health Organization’s Global 2018 TB Report.
The cost to the family and the community can be devastating, said Dr. Rajesh Sood, an epidemiologist serving as the Kangra District Program Manager of the program.
“The losses include the patient’s own income; the time and income loss for the caregiver; the family’s savings and assets spent on the illness. The family may even go into debt. If the patient runs a shop, any shop closing affects the village economy,” Sood Said.
India’s program to eradicate TB is trying to reach all 1.3 billion of its people, house by house, village by village, for diagnosis and treatment of TB, all of it provided free to the patients.
Teams of health care workers knock on door after door to seek out people who may be suffering from persistent coughs, chest pain, or a prolonged fever. When they find someone with suspicious symptoms, they give them a sputum test on the spot. Patients with active TB are treated and monitored for the months-long regimen.
Sood works in Kangra District, in the foothills of the Himalayas, where the elevation ranges from 1,400 to 21,000 feet and the landscape varies from verdant greens to bustling towns to fearsome slopes. This district’s 700 teams traverse the often forbidding terrain to reach its population of 1.5 million. About 3400 new TB cases are found here every year, out of 2.7 million across India.
Misconceptions and Stigma
Some of the biggest hurdles they encounter are common worldwide: a lack of education, social stigma, and tenacious misconceptions. Early in their campaign, “some people believed that TB was hereditary,” Sood said. “People wouldn’t admit to having it so that their children wouldn’t be stigmatized. Some patients think they would have a tough time marrying off their children.” He has even heard of a man abandoning his wife after she became ill with TB.
Sood has seen villagers hiding their illnesses from their communities and government workers, complicating an already rigorous course of treatment, which requires a daily dose of medicine for at least six months. The powerful anti-microbial drugs’ side effects can also impede full compliance. Partial compliance can lead to recurrence, and is one of the main causes of the emergence of drug-resistant strains of the disease.
Mobile Vans
But other challenges are regional: unpaved, curvy, mountainous roads, if they exist at all. When Kuldeep, a 40-year-old resident of Sari, a village in Kangra District, was diagnosed with TB, his village didn’t even have a road. A visit to the nearest clinic for diagnosis or treatment required 12 kms of walking to and from the bus station and a bumpy, nauseating bus ride. The round trip took him a whole day and left him spent. Now, 6 years later and cured, Kuldeep is trying to ease the commute for others. He drives one of the mobile vans that bring limited-service clinics to the patients. Instead of patients having to trek to the nearest clinic or hospital, health workers can drop off sputum samples at these mobile vans.
Before this courier service, “It could take weeks for a patient to finally get the correct diagnosis or begin treatment,” Kuldeep said. Patients often needed to make several trips to the clinic. “It could take forever. Along the way, he would ride in buses and infect others.”
Innovative Medicine
The program also puts to work some of the latest medical diagnostic tools. The new Nucleic Acid Amplification Test (CBNAAT, also known as GeneXpert) can produce accurate results within two hours, a huge improvement in speed and accuracy over the old method.
Smaller technological innovations also help with compliance. Patients who cannot be monitored in person are given a monthly supply of the medicine in blister packs called 99 DOTS (directly-observed treatment, short course). When they punch out a pill, they see a unique toll-free phone number. They call the number and are automatically logged to have taken the medicine.
Despite the multi-pronged effort, challenges remain. The roads in many of the villages, like Kuldeep’s, are still unpaved. Also, the program allocates very little funding for education campaigns.
“Right now TB is declining at the rate of 1–2% per year in India and globally,” Sood said. “To reach our goals, the acceleration needs to be much faster.”
Still, the team members are energized by incremental successes, such as winning the trust of the once-skeptical villagers. When Kuldeep helped treat a girl with recurrent TB symptoms, they became so hopeful that they brought him other patients with similar symptoms. Some of them, though, had coughs from smoking or colds, not TB.
“But they thought we can cure everyone,” Kuldeep said. “If she can be cured, why not everyone?”