A mysterious illness plagues dozens of villages in the southern state of Andhra Pradesh, according to a report published today by the Center for Public Integrity, a nonprofit investigative news group based in Washington. The disease, a type of chronic kidney ailment, has affected about a third of the population in some areas in the region of Uddanam, the journalist Sasha Chavkin writes.
Mr. Chavkin published a report last year about a vast swath of Central America stricken by a similar, and similarly unexplained, epidemic. Now, he reports that India isn't a stranger to the disease either. Mr. Chavkin shares his findings with India Ink, including theories on what's causing the disease and what is beh ind the mounting death toll.
[Full disclosure: Mr. Chavkin was my classmate at Columbia Graduate School of Journalism in New York and we have stayed in touch since graduating. I have also helped put him in touch with a potential source for his reporting from Andhra Pradesh.]
Could you start by telling me what chronic kidney disease, or C.K.D., is? How dangerous is it?
Chronic kidney disease is a common illness worldwide that occurs when your kidneys get damaged and no longer filter your blood properly. In its early stages, it can be managed by changing your diet and lifestyle, but once it gets severe enough you need dialysis and ultimately a kidney transplant to survive. Â The main causes globally are diabetes, high blood pressure and obesity.
But the outbreaks we encountered are totally different from most chronic kidney disease. The victims don't have any of the usual risk factors and are mostly relatively young farm wo rkers. So it's a mystery why their kidneys are failing.
You wrote about Nicaragua's “Island of the Widows,†so named because of the deaths of their husbands from C.K.D. there. You've also found the disease in Sri Lanka. What tipped you off that something similar was happening in India?
A researcher who was investigating the disease in Nicaragua sent us an unpublished study examining what was happening in Andhra Pradesh. The similarity of their findings was uncanny: rural workers getting sick in the prime of their lives, a very specific geographic area affected, and the disease being discovered by doctors in the 1990s. The crucial tip was when we heard that workers in both places were getting the same very rare kind of damage to a part of the kidney called the tubules â€" which is consistent with severe dehydration and toxic exposure.
What did you find in Uddanam? Who exactly has it affected?
The victims in Uddanam are mostly rural farm workers, an d the main crops are cashews, coconuts and rice paddy. Many of them are breadwinners for their families, so when they get sick it devastates the whole community â€" it leaves a trail of widows and orphans. One of the most dangerous things about C.K.D. is that unless you get tested, you wouldn't notice it until you're already in the late stages of the disease and you need very expensive treatment such as dialysis to survive.
How many people are dying because of this disease in Uddanam?
There aren't definitive statistics on how many people have the disease, partly because its not officially recognized and tracked separately from ordinary C.K.D.. But we do know that over the last five years in Uddanam, 1,520 people have gotten treatment for this type of kidney failure through the Andhra Pradesh state health insurance plan, Aarogyasri. Since these are the people who are already advanced enough in the disease to get sick and seek out treatment, we think several times that number are currently in earlier stages of C.K.D.
Has this occurred outside of Uddanam in India?
We don't have clear evidence of other outbreaks in India. But we've heard that similar cases have been reported in Tamil Nadu and we're encouraging people with evidence of other outbreaks to tell us about them with a short e-mail form. If you've heard about other cases, we want to know.
You report there are no clear answers as to what's causing this disease. What are some of the theories?
The leading theory in Uddanam is that there is some kind of toxic contamination, most likely in the drinking water or possibly in the soil. There are two teams that are studying the disease â€" one from Harvard University working in partnership with the Andhra Pradesh government, and the other from Stony Brook University in New York. Both are focused on toxic contamination, possibly from pesticides or other chemicals used in the fields, but neither has come up with an y clear answers.
In Sri Lanka the government and World Health Organization conducted a massive three-year study and announced just this June that they believe they have identified the culprits: the toxic heavy metals cadmium and arsenic, which they say have gotten into the food chain. Â But they haven't released any data to support this or explained how they think the contamination occurred. There are still many questions and doubts about their findings. Until the cause is proven, we also can't be sure whether it's the same culprit from Sri Lanka to India to Central America.
What are the measures being taken to tackle C.K.D. in India?
Ravi Raju Tatapudi, a leading nephrologist in the area, worked for years to persuade to government to recognize and take action against the disease. Recently, he became the director of medical education for the Andhra Pradesh government, and during the three years he served he succeeded in constructing several state-of-the-art dialysis units. But none of them are in Uddanam itself, and there is still a far greater need that the government is able to meet.
What's the most unexpected thing you found?
It's shocking that there is a type of disease that overall has killed tens of thousands of people and affects at least three different regions, but no one in the scientific or international communities is connecting the dots or responding strongly enough to solve the problem. Scientists are convinced that the deaths from this illness could be prevented if they could figure out the cause. Â No one has made the kind of investment in research that is necessary to solve a problem that has a real solution, and to save lives that really could be saved.
Is the C.K.D. in India similar to the epidemic in Sri Lanka and Central America? How is it different?
In many ways the disease is similar in each place â€" farm workers, relatively young victims, who have tubulo-interstitial kidney dama ge. But there is one notable difference: in India both men and women seem to get the disease about equally, while in Sri Lanka and Central America the victims are overwhelmingly male. Researchers in Uddanam say this leads them suspect that the cause is some kind of exposure to the community as a whole, such as contamination of the drinking water.
How has C.K.D. affected the community in Uddanam? You mention it's hard for residents to get married there.
The effect on the community is devastating â€" not just in lives lost but economically and psychologically. A number of people in Uddanam told us that families are scared to send a bride or groom to live there, or sometimes to accept a marriage into their family by a person from Uddanam. There is a fear that young people from Uddanam will develop C.K.D. and not live long enough to support a family, and a fear that the region itself is contaminated and people who move there will get sick.
We spoke to two siste rs-in-law â€" they called themselves co-sisters because they lived in the same compound â€" who had married two brothers and moved to a village in Uddanam called Varaka. Both brothers died of C.K.D. within a month of each other in 2007, when they were in their mid-30s. The family had to sell most of their land to pay for medical care, and the co-sisters now struggle to get by in part by working in what remains of the fields that previously belonged to their husbands.
Do you think C.K.D. is affecting other countries as well? Are you planning to explore that possibility?
When I first started investigating this epidemic, it was a story about a single sugar plantation in Nicaragua. Then it kept getting wider and wider â€" a second plantation, then a nearly 700-mile stretch of Central America's Pacific Coast. Now something very similar is happening in India and Sri Lanka.
We think this may be a broader international epidemic that is just now coming to light.
[The India page of Center for Public Integrity's report will go live Wednesday and can be accessed here.]
