On January 30, 2012, several of the world’s leading figures on health and medicine convened at the Royal College of Physicians in London, marking the start of a unified front against a class of conditions called neglected tropical diseases (NTDs).
NTDs afflict millions of people in the most deprived, marginalized, and ignored communities across the planet. But despite being so widespread, there has never been a day dedicated to building awareness, drumming up support, and demanding action regarding NTDs. Even in the age of online advocacy and growing social awareness among the public, NTDs remained among the few health and development that had never hit a big advocacy milestone.
Eight years after that momentous meeting in London, things may finally be changing. January 30, 2020 was the first time the World NTD Day was ever celebrated. Seeking to undo NTDs’ neglected status, the 2020 event celebrated all the progress that’s been made so far towards controlling these diseases, as well as took stock of the daunting task ahead and lay out a roadmap of action.
Countries all over the world joined in on the program, each with their own local event. In India, some of the most influential advocacy groups held an informative seminar, entitled ‘Future Forward 2020: Building Momentum for Inclusion and Elimination,’ with the goal of highlighting the existing burden, barriers, and policy interventions required to deal with NTDs.
In a series of talks and panels, high-ranking officials in India set the country on an accelerated path to eliminating NTDs, making sure to integrate scientific, technological, and healthcare advances that have emerged over the years. The role of proper legislation and strategic litigation were also discussed, highlighting the value of an integrated, multidisciplinary approach.
By the end of the event, all partners affirmed their commitment and cooperation to address NTDs and increase the visibility of the issue.
Not long after, however, the world was taken hostage by COVID-19, and NTDs slipped back even further along the spectrum of neglect.
In 1985, more than 10 million people in India had leprosy, a neglected tropical disease. By the mid 2000s, this number had shrunk drastically to just a couple hundred thousand after years of strong public health campaigns by the government. In 2005, India declared itself free of leprosy. But in 2017, just over a decade later, driven by a deteriorating public health system and poor sanitation, the disease reared its head once more.
India’s burden
The term NTD refers to a diverse class of tropical infections mostly prevalent in poor regions. As implied, these diseases receive relatively and decidedly less mainstream attention (along with funding for treatment and research) than their better-known cousins, like HIV, tuberculosis, and malaria.
NTDs are caused by pathogens, such as viruses, bacteria, and helminths, which can move through the environment and enter the human body through a variety of channels. Even before the pandemic, the world already had a list of at least 13 recognized NTDs, 11 of which pose urgent problems for India, according to the 2016 Global Burden of Disease Report. In 2018, India counted around 697 million people who required interventions against NTDs, the highest in the world.
In particular, there are some 30 million people in India who suffer from lymphatic filariasis, a helminthic disease that attacks the lymphatic system, leading to swollen extremities and, ultimately, disability. India contributes more than 40 percent of all lymphatic filariasis cases worldwide. The country also records staggering counts of hookworm infections, with around 70 million afflicted people.
Disease prevalence goes farther beyond numbers and graphs. Trachoma is an NTD caused by a bacterium that by 2003 had infected around 1 million people in India, particularly in Rajasthan, one of its northern states. According to the 2014–2017 National Trachoma Survey Report, as referenced in a government press release, the country had since broken free of the disease, and its overall prevalence had dropped to a measly 0.7 percent. But by then, it was too late for many people. Trachoma is a chronic condition that causes blindness. There’s no way to reverse it.
The problem of NTDs also extend beyond India, and plagues the entire region. South Asia accounts for around one-quarter of the world’s soil-transmitted helminth infections, one-third of global deaths from rabies, and one-half of the global cases of lymphatic filariasis, visceral leishmaniasis, and leprosy. The region is also seeing an emergence of three major airborne virus infections: dengue, Japanese encephalitis, and chikungunya.
The social determinants of NTDs
In 1991, the World Health Assembly put up a united front against leprosy, another NTD borne of a bacterium and which can cause massive nerve damage, leading to paralysis if left unchecked. Thankfully, leprosy turned out to be an easy problem to solve: early diagnosis and a combination of antibiotics was enough to keep the disease at bay.
The campaign of the Assembly proved to be effective, and leprosy shrunk from 12 million cases in 1985 to just a couple of hundred thousand in 2009. Sixteen years ago, in 2005, after running an aggressive and successful eradication campaign, India also announced that it had finally dropped leprosy from its list of public health concerns.
But in 2017, health authorities in the country were stunned to record over 130,000 new cases of leprosy, around half of which were concentrated in the Adilabad district in India’s south-central state of Telangana. Most cases were also caught at an advanced stage, beyond what common medicines could still reliably treat.
The pathogen that causes leprosy grows slowly, making it relatively difficult to contract the disease from nature. The single most effective way for leprosy to transmit is through prolonged, sustained contact with a person who already has it. Uttar Pradesh, a state in northern India, also the country’s most populous, saw a large share of leprosy cases during the 2017 outbreak.
On the other hand, Kerala, a more developed state along the southwestern coast of India, reported much lower figures, likely also affected by better healthcare facilities in the state.
The resurgence of leprosy in India laid bare how health is much more than just a medical, clinical issue. In developing countries, in particular, the social determinants of health could spell the difference between successfully controlling a disease or, as in India’s case, its resurgence.
Poverty, water, sanitation, housing, clustering, migration, gender and other sociocultural factors, and even disasters and conflicts all affect how wide and hard NTDs can hit. Cholera, for instance, is strongly linked to sanitation, as ingestion of food and water contaminated by infected feces is its main channel of transmission.
According to a 2017 report by WaterAid, India was the worst country in the world in terms of access to basic sanitation. An environment where people are forced to live simultaneously and continuously with their waste is prime breeding ground for Cholera, and its rates have skyrocketed in the most destitute communities in India. The situation is only made worse by the inaccessibility of water treatment systems in the country, especially for those who need it the most.
NTDs also disproportionately affect women. Across countless of villages in India, the traditional household roles that women and girls are forced into make them much more susceptible to these diseases. For instance, since they are primarily responsible for collecting and carrying water, as well cooking and cleaning, they are more often in the vicinity of bodies of water, placing them at higher risk of vector- and water-borne NTDs. These households also tend to be below the poverty line, and the lack of financial resources further discourages women who do get sick from seeking treatment.
India still heavily relegates women to domestic roles, such as collecting water, cooking, and cleaning. This puts them at direct risk of water-borne NTDs, which is further magnified by the country’s poor water treatment methods, lack of community-based clinics for disease monitoring, and poor awareness of these infections in the general population.
The way out
More than its other social determinants, poverty seems to be a particular cornerstone of NTDs—its prevalence is always repressively high in the poorest regions, in communities living in remote, rural areas, or even in urban slums and conflict zones.
Since NTDs ebb and flow within highly unstructured, informal communities that themselves are mostly neglected, attention that has gone into the research, drug discovery, diagnostics, and vaccine development for these diseases has been sparse. So, too, have policies to incentivize these efforts.
For instance, despite showing how it can resurge when left unchecked, leprosy still has not had a vaccine developed against it. According to Mary Verghese, executive director at The Leprosy Mission Trust India, this is one of the biggest hurdles to its eradication. Without it, cutting lines of transmission require people to be knowledgeable regarding its earliest signs and symptoms—and be willing to get treated.
But even this has become difficult in India, given its traditionally weak healthcare system. In the first place, people who are most at-risk of leprosy are unlikely to be informed about the disease’s peculiarities. Medical follow-up has also grown patchy, or is totally absent in many cases, for a variety of reasons. Courts have tried to help by directing the government in 2016 to roll out informational campaigns about leprosy, as well as ruling against the use of frightening images, all in an attempt to undo at least some of the stigma attached to the disease.
Following court orders, the state launched the Leprosy Case Detection Campaign in the same year, deploying some 200,000 teams across the country. By the end of the Campaign, more than 65,000 possible cases of leprosy were detected, of which around 4,000 were later confirmed.
The pandemic has so severely disrupted essential health and medical services, depriving countless NTD patients of the care they need. “Community-based interventions such as large-scale treatment programs are affected in almost 60 percent of countries,” said Dr Gautam Biswas, Head, Strategic Information and Analytics, WHO Department of Control of Neglected Tropical Diseases.
“Other activities including community awareness and health education campaigns are affected in 52 percent of countries,” he added, referencing the 2021 WHO ‘pulse survey,’ which looked at how the pandemic affected the continuity of essential health services across 135 countries.
In India, as in other countries, especially those with already-weak public health systems, mechanisms to keep NTDs at bay have been disrupted. Programs that had been established pre-pandemic to improve vector control, veterinary health, water and sanitation, and health education have all stalled due to movement and gathering restrictions.
To make things worse, COVID-19 has confounded both the diagnosis of and care for common NTDs. Dengue, for example, shares symptoms with COVID-19, which may lead to mistaken diagnoses. The co-infection, too, of the COVID-19 virus with different NTD pathogens leads to more severe illnesses and, ultimately, a greater risk of death.
NTDs pose a broad, systemic problem, so solutions need to be just as sweeping. Since many of these infections are easily treated with common drugs, prevention and diagnosis will be the frontiers of the country’s battle against NTDs. At the grassroots level, India desperately needs a strong education and de-stigmatization program complemented by an equally robust primary healthcare system.
But to help stop infections even before they happen, India also needs to heavily invest in sanitation, improving access to clean water for and promoting proper hygiene to its highest-risk communities. On the international stage, key partnerships and solidarity will remain key in addressing shortages in medications and equipment, as well as improving research around NTDs. ●
Nayanika Konger is a Corporate Research Analyst Intern at Chrysalis Services, a social sector facilitator that fosters connections among non-profits, philanthropists, and corporations. She has a Master’s degree in Peace and Conflict Studies from the Tata Institute of Social Sciences, Guwahati campus.
