Since January, at least 14 people from Koya tribe have died from the disease.

Pedal edemaImage for representation/Picxy.com/rajastills
news Healthcare Friday, May 29, 2020 - 14:11

Between January and April this year, 6 men have died in the Maduguru village of Chintoor mandal in East Godavari district. Two of them, Rambabu and Jagadish, were only in their early 20s. They are believed to have died from a mysterious disease, characterised by the swelling of the leg, or pedal edema. The disease has affected the Koya tribe population in several villages of the region for several years now. 

This year, there has been a sudden spike in the number of cases and deaths, prompting the state government to take action. Families of 14 people who have died from the disease were granted an ex-gratia of Rs 5 lakh. Minister for Health Alla Kali Krishna Srinivas (Nani) visited the area earlier this week and announced the expansion of the area hospital in Chintoor, and the establishment of a dialysis centre. He also said that an expert team would be formed to perform a scientific study on the spread of the disease in the region. 

While swelling of the leg is just one indication of the disease, the affected people are losing their lives from different reasons, from cirrhosis of the liver to kidney failure and cardiac arrest, according to Chintoor ITDA (Integrated Tribal Development Agency) Project Officer Venkata Ramana. 

Since March this year, around 12 pedal edema deaths have been officially registered. Around 103 people showing symptoms have been identified and being monitored by government health officials. With the cause of the disease, and the symptoms and effects not clearly known, people in the affected villages are struggling to make sense of what is happening to themselves and those around them. 

Causes for the disease

While there was a spike in cases recently in 2017, East Godavari District Medical and Health Officer (DMHO) Satya Suseela says that the disease has been around for nearly thirty years.   

“There could be many reasons. Based on the food habits of the people, it could be malnutrition, anaemia, or vitamin deficiency, due to lack of consumption of leafy vegetables. It could also be because of alcohol intake,” she said. 

The DMHO and the ITDA Project Officer (PO) Venkata Ramana, both said that continued alcohol consumption could be one of the causes. “They consume home-brewed liquor containing toxic substances that may affect the liver and kidney. Most of the deaths have been from kidney and heart failures,” the DMHO said. 

Chintoor ITDA PO Venkata Ramana makes a similar argument. “This is an outcome of 30-35 years of issues. The main factors include lack of proper diet and heavy consumption of local-made liquor. People here drink toddy regularly, and there’s a practice of brewing liquor with urea and battery powder,” he said. He says that one of the major problems has been found to be thiamin and vitamin D1 deficiency caused by excessive liquor consumption, and attributed the current spike in cases to increased alcohol consumption as people are staying in more because of lockdown.  

But this explanation has not convinced local residents entirely. Yerramsetti Sreenu, the district committee member of CPI(M), says that the government tends to brand the people as alcoholics and is overlooking more complex reasons. “Young people in their early 20s are dying. This is not normal,” he says. Sreenu goes on to say that without proper tests to ascertain the cause, such a conclusion cannot be drawn. 

“Alcohol consumption is not a new practice here, and not everybody consumes the harmful variety with battery powder that the officials speak of. Alcohol use may cause long term complications but that does not explain the death of a 21-year-old boy,” he insists. 

Officials say that most of the deaths registered are of men who were 30 to 50 years old. “Even the 14 official deaths may not all necessarily be due to pedal edema, but all the patients happened to have swollen legs,” Venkata Ramana says.

But with unclear indications and lack of diagnosis, Sreenu says that the number of deaths could be much higher. “Because of the lockdown, it’s possible that we are not getting to know how many people are affected or have died. The official death count is 14, but we know of at least 25 unexplained deaths of young men in their 20s and 30s. The number could be higher,” he said. 

Sreenu says that apart from diet and alcohol intake, the possibility of water pollution must also be looked into, as the affected villages depend on the Sabari and Sileru river streams for drinking water. 

Access to healthcare

ITDA PO Venkata Ramana says that according to the study done by a medical team 3 years back, after the last spike, it was found that the Registered Medical Practitioners (RMPs) had been indiscriminately prescribing painkillers and antibiotics. “People also visit traditional healers, who administer liquids causing damage to the organs,” he said. 

Sreenu, on the other hand, argues that the local healthcare providers have failed to build faith among the people. “The nearest big hospital where people are taken for serious cases, is the Government General Hospital in Kakinada. Because of the long distances and the hilly roads, combined with what people feel is negligence towards them at the hospital, almost everyone who had pedal edema and was taken to Kakinada has died. This has even led to a small local myth that going to Kakinada will result in death. Many people even refuse to go there for this reason, even if officials refer them to Kakinada,” he says. 

Sreenu argues that while health officials have claimed that people first approach healers when they’re affected and then approach them when it’s too late, this is not always the case. “There was one boy from Maduguru who went to see a healer and later passed away. But most people first go to the health worker, then to the area hospital. When their condition persists, that’s when they go to healers as a last resort, because they prefer that to going to Kakinada,” he says, adding that the onus is on the health workers and officials to build trust among the people. “It’s not just tribal people who believe in superstitions, so do others. You can’t blame them. It’s the officials’ responsibility to build trust.”

Finding answers 

With the recurrence of the disease in large numbers, the ITDA PO said that concerted measures will now be taken to control liquor consumption, and to provide proper nutrition, to raise haemoglobin levels. “We are starting door to door awareness campaigns. We are planning to set up community-level farms supported by ITDA and train people to grow vegetables locally. We are also planning to ruthlessly go against RMPs prescribing a high dosage of drugs,” Venkata Ramana said. 

Officials say that efforts are on to survey households to identify people showing swollen leg symptoms, and to test their liver and kidney conditions by performing liver function and renal function tests. “If the serum creatinine level or urea levels are very high, they will be referred to Kakinada GGH. For lower cases, they will be treated with medication here itself. The dialysis centre announced at Chintoor will hopefully build confidence among the people,” he said. 

So far, around 437 people from nearly 15 villages have been identified and tested. Around 106 people were found to be at risk based on the tests, and are being monitored. 

The state Health Minister Alla Nani, during his visit to the region, announced the ex gratia for the deceased, adding that a preliminary report on the latest spurt in deaths had been submitted to Chief Minister Jagan Mohan Reddy. He also reportedly announced that a team of medical experts would study blood samples from multiple people living in pedal edema hotspot areas, to look into the reason for the latest outbreak. 

However, as ITDA PO Venkata Ramana mentioned, such a study was already performed after the previous major outbreak, and no satisfactory answers have been found so far. According to The Hindu, the Health Minister said that no decision has yet been made on consulting experts from national-level medical research institutes. As of Wednesday, 12 patients from the Chintoor agency region were reportedlyshifted to the Kakinada GGH, where a special ward has been set up for their treatment. 

Sreenu expresses wariness about the government’s response, saying it could be a short-lived interest in addressing the issue like last time. “Officials have promised clean drinking water and supply of vegetables in Maduguru village. So far, a medical camp has been conducted for a day, and a few supplies like dal and turmeric were given. We have to see if they will ensure sustained provision of nutritious food and clean water,” he says, adding that officials must take the issue as seriously as COVID-19, and treat it as a health emergency.
 
Sreenu says that past requests for increased sample testing, proper post mortems and testing of drinking water samples have not been considered seriously by officials. “They have expanded the area hospital, but simply bringing patients here will not help. We hope they find a more long-term solution this time, unlike previous years,” he says. 
 

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