Mukhen Murah, a tea garden worker in his early 20s, fell unconscious one day while working at Basmatia tea estate in Assam, India. Murah has had recurrent episodes of epilepsy since 2014 — over time, he sensed when he would collapse.
“To avoid the tumbling, I would lie on my back and eventually fall asleep. My friends working nearby would pick me up,” said Murah.
At first, he began taking medicines prepared by traditional healers. Then, a computed tomography (CT) scan at Assam Medical College and Hospital (AMCH) soon revealed a worm in his brain.
Murah had been afflicted with neurocysticercosis (NCC), a preventable disease that wreaks havoc among Assam’s pig-rearing communities among others. The disease, which can result in adult-onset epilepsy, is caused when a human consumes meat from — or is indirectly in contact with — a pig infected with tapeworm.
The eggs of the tapeworm invade the muscles of the human body to make cysts. Sometimes these cysts get into people’s brains, triggering epileptic seizures, headaches, difficulty with balance and excess fluid around the brain.
These frequent collapses cost Murah his job: Six-seven months ago, when it came to the tea estate manager’s attention, he was fired as a tea picker. Today, in Murah’s place, his wife plucks tea leaves, alongside his mother and brother.
A 2019 study by non-profit Oxfam revealed that Assam’s tea workers are one of the state’s most marginalized with unsafe working conditions. They lack basic amenities earn low incomes, at high risk of human rights violations.
To supplement their meager income, many plantation workers — both permanent and temporary — rear pigs. It requires little investment and labor.
The findings were in line with older research that NCC was one of the leading cause of seizures in developing countries, particularly in areas without proper sanitation, where pig-rearing was widespread.
Murah’s brother, Bikul Murah, said he raised four pigs for eight months near a field bordering the river Tengakhat. He earned at least Rs 3,000 per pig – a sizeable boost to his daily wage of Rs 170.
Pork is a staple protein in Northeast India. It accounts for about 68.75% of pork consumed in India. Nagaland tops the list, followed by Assam and Meghalaya.
Like Murah, at least half of the 100 families living in the area used to raise pigs to supplement their meagre daily wage, a plantation workers told this reporter.
“In Assam, pigs are mostly reared in dirty backyards and fed waste. Only 1-2%farmers are keen on hygiene,” said Diganta Saikia, a commercial pig farmer and a member of the Northeast Progressive Pig Farmers Association.
Commercial pig farmers buy pig feed from and follow a de-worming schedule, he claimed.
Families of those suffering from NCC have a history of backyard pig farming and open defecation (due to the lack of proper toilets). Chances of contracting this little-known zoonotic disease are higher in such conditions.
How the disease spreads
The life cycle of a pork tapeworm (taenia solium) takes it from pigs to humans and vice-versa.
Tapeworm eggs are spread through food, water, or surfaces contaminated with feces. Humans swallow the eggs when they eat contaminated food or put contaminated fingers in their mouth.
“When people consume infected, undercooked pork, they are infected with taenia metacestodes (the larval stage of tapeworm) that develop into adult tapeworm in their intestines (taeniasis). On reaching the brain the infection turns NCC, causing seizures,” Dr Kanwar Narain, director of Indian Council of Medical Research (ICMR), Dibrugarh, told this reporter.
“Adult tapeworms produce eggs that are released in the person’s stool. During open defecation, the eggs can get lodged in nails and end up in humans. Those hands can contaminate food that others eat,” he added.
“A person who has never eaten pork in his life can get infected this way,” explained Narain who also authored the Nature study, attributing most adult-onset active epileptic cases in Assam tea gardens to NCC.
Humans are the only definitive host for the parasite to complete its life cycle. This spillover from pigs to humans and vice-versa makes NCC a zoonotic disease.
The US Centers for Disease Control and Prevention (CDC) make it clear that while those with NCC cannot spread the disease to other people, “people with taeniasis (tapeworm infection in the intestine) may spread tapeworm eggs to other people if they do not practice good hygiene (e.g, hand washing after they use the toilet), which may result in cysticercosis if people swallow the eggs.”
Dr Dhruba Jyoti Kurmi, a neurosurgeon at AMCH, pointed out that it’s important to look beyond the stereotype that NCC spreads only among pork-eating communities. In fact, most recent cases of NCC have been from urban areas in Assam where people eat raw salads, he said.
“NCC has been endemic in Assam for quite long. The only difference is it is getting detected only recently,” said Dr Bhagat Lal Dutta, a One Health epidemiologist based in Assam.
In most hospitals in Assam, NCC is treated like a common illness, not like other zoonotic or vector-borne diseases — Japanese encephalitis, for instance, has a separate register, he added. Doctors also often confuse NCC with tuberculosis of the brain.
Reporting seizures cost jobs
Like Murah, many tea garden workers in the region reported losing their jobs due to recurrent epileptic fits.
Naresh Kurmi had eight such fits this in 2021. “During his fits, his mind draws a blank and he fails to identify his children. He thinks he is going to die,” said his wife, who also works in the gardens. She chose not to reveal her name fearing reprisal.
Naresh was taken to the dispensary on the tea garden premises and then to AMCH.
“There was no medicine to treat my seizure in the dispensary. They asked to perform a CT scan at the government hospital. When I asked officials of the tea estate for some money for the scan, they plainly denied,” Naresh said.
In case of such emergencies, tea workers are eligible to seek advances (deductible from future wages). But Naresh’s request was not approved, and he remains untreated.
As his seizures failed to subside, Naresh was laid off from his temporary job of handling heavy machinery, for which he would earn Rs 120 per day. He currently takes up low-paying mending jobs (like fixing faulty wirings).
Murah has not had seizures for a year but hasn’t been able to regain his job. According to Narain, the cystic larva (of the tapeworm) in his brain may have calcified (hence dead). In that case, he Muran won’t suffer further seizures.
The dispensary at Basmatia garden had registered six cases of epilepsy. The real numbers, however, may be five times as much, claimed Montu Kario, a plantation worker who mobilizes colleagues during elections.
The workers want to keep a lid on the real numbers for fear of reprisal, he added.
In fact, two deaths — one a confirmed case of NCC — have gone unreported in recent years.
Kamru Majhi, a temporary plantation worker, died at 37 last year. Doctors at AMCH found the parasite in his brain after a CT scan in 2006 when he first fell and hurt himself on the road, his cousin Biroj Majhi told Down to Earth. “The family spent lakhs but to no avail,” he claimed.
Kamru was asked to leave work in 2016 after being a temp for almost a decade at Rs 48 a day.
These cysts in brains can be fatal if there are multiple lesions. “If there is a heavier cyst burden and it involves vital organs such as the brain, death is likely,” said Narain.
Many villagers in this region said they prefer traditional herbal medicines over prescribed synthetic drugs as they are more affordable and within their reach.
“I had fewer seizures with the jungli dorob, a viscous drink prepared traditionally from herbs,” Murah said.
Biroj Majhi recalled consulting a witch doctor seven kilometers away, for his cousin Kamru, who claimed that he could rid patients’ body of the worms. “He would chant some verses. They say he can guide the worms to crawl outside a victim’s ear,” he said.
Extent of medical treatment
Treatment for NCC can be costly, given the Rs 205 a day wage of a tea worker. The minimum requirement to detect the disease during the onset of an epileptic fit is a CT scan, which costs Rs 1,000 even at government hospitals. A contrast show, to highlight the areas of the body examined, for another Rs 1,500-Rs 2,000 is also needed.
“CT scans are free for those below the poverty line, which should ideally cover tea workers. But the penetration of health welfare schemes such as Pradhan Mantri Jan Arogya Yojana and Atal Amrit Abhiyan is low among them. Producing proofs of income becomes a hassle too. So they end up bearing exorbitant costs,” said Kurmi of AMCH.
The patients should be given medicines such as anthelmintics, antiepileptics, steroids while surgeries should also be available. But a more holistic, One Health approach was needed, said One Health expert Dutta.
The One Health approach addresses human health in conjunction with animal health and surrounding environment. As part of it, public health practitioners would need to prevent tapeworms from getting into human brains in the first place, by employing cost-effective and simple tools for detection of carriers of taenia solium — such as stool examination for humans and checking for shaky tongues in pigs in the rearing areas, Dutta added.
Improving pig-farming practices, like using de-worming medicines, can go a long way.
But perhaps the most important is to improve sanitation practices and health education through on-ground interventions with communities at risk. “Eradicating open defecation and washing hands are must to prevent the disease,” Narain said.
The ‘Swach Bharat Mission’ myth
Very few of those afflicted with NCC in the region have functional toilets at their houses. Since the scheme was launched by Prime Minister Narendra Modi in 2014, the government claimed, more than 100 million toilets have been built in India towards “an open defecation-free” country.
Murah’s family was handed down a half-constructed toilet under the government’s flagship Swachh Bharat Mission. With the toilet still not functional, the family continues to defecate in the open.
Most tea workers this reporter spoke to were accustomed to doing the same, by nearby rivers. Pigs roamed freely on the same fields. Taenia solium eggs released via stool in such fields contaminate the environment, putting both pigs and humans at risk — something that can be avoided if people use toilets.
Both the World Health Organization and the CDC have stated that the risk of taeniasis and NCC would be greatly reduced with improved sanitation and hygiene.
Until the conditions of Assam’s vulnerable tea workers improve, an eminently treatable disease will remain a threat to their livelihoods and lives.
This story was supported by Internews’ Earth Journalism Network. It was originally published on 10 December 2021 in Down to Earth and has been lightly edited for length and clarity.
Banner image: Laborers plucking tea leaves in a tea estate in Assam / Credit: Nalin A via Flickr.