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CHINTALAVEEDHI, India — It has been two years since Rathnalamma Raasa died, and her family still doesn’t know what killed her.
What started as a fever quickly left Raasa, 25, unable to eat or move. Medicines the local health clinic prescribed drained the family’s meager savings but provided no relief. She was unconscious by the time her husband borrowed enough money to visit a government hospital in Visakhapatnam, the nearest city, where doctors said her real illness had gone undetected: falciparum malaria, a parasitic disease that, without timely treatment, had spread to her brain.
She died at the hospital two days later, in August 2013, but the confusion didn’t end there. Her official record lists the cause of death as “cardiorespiratory failure,” a catchall term that means her heart and lungs ceased to function. It doesn't once mention malaria.
“I still don’t understand what causes malaria … The kids don’t understand what happened,” says her father-in-law, Balaraju Raasa, an elderly farmer who helps care for the three children she left behind. “Until she was about to die, the doctors never told us anything clearly … They just gave us pills and left. I felt like they weren’t telling us the truth.”
The staggering gap between official data and reality means that thousands of people die without an accurate diagnosis, according to a study by the British medical journal The Lancet. And the government is able to tout the malaria program’s success without a clear picture of how many people are dying. Malaria costs the country nearly $2 billion each year, and the impact of lost earnings and treatment bills falls disproportionately on rural, poor families. An extensive investigation by Al Jazeera America unearthed routine manipulation of malaria data, crippling shortages of essential supplies, chronic understaffing of hospitals and enduring dysfunction in World Bank–funded projects, which led to the Indian government’s returning millions of dollars in aid.
Many health officials privately acknowledge this systemwide failure but say they are helpless. In a review of hundreds of pages of program records, medical supply contracts and village health registers — as well as interviews with dozens of insiders — reporters found that the most serious failures often persist for years in plain sight. But because most victims are poor villagers like the Raasas, hidden from the public eye, this crisis causes little outrage.
Part 1: Disappearing data
Most malaria experts and health practitioners agree that India’s efforts to fight the disease through the National Vector Borne Disease Control Program (NVBDCP) have made headway over the past two decades. Thousands of female community health workers are now armed with blood testing kits, and malaria medications are cheap and widely manufactured. But independent doctors and malaria researchers say progress is hard to measure when the government’s data are wildly inaccurate.
“Malaria deaths happen where political power ends, and data collection suffers when political power is not there,” says Yogesh Jain, a physician and public health advocate with the nonprofit rural health organization Jan Swasthya Sahyog. “Only garbage [data] have gone into the system.”
Reporters found errors and evidence of tampering in every health register in 20 malaria-prone villages in the states of Odisha in the east and Andhra Pradesh in the south. Malaria cases seemed to disappear somewhere along the chain between village health workers taking handwritten notes and the official records at district malaria offices.
Health workers at rural government clinics say they are simply too overburdened to document everything, so sometimes cases don’t make it into the records. At the primary health clinic in Hukumpeta, which serves the Raasas’ village, a lab technician tasked with examining blood samples for the malaria parasite had 800 pending slides the month before reporters visited. With the two other technician posts remaining vacant, the lab could process only 60 slides a day. This kind of backlog can leave sick patients hanging — patients like Rathnalamma Raasa, who was tested at the clinic but never received the result.
Even in better-equipped facilities like King George Hospital, the roughly 1,000-bed facility in the eastern city of Visakhapatnam where Raasa died, stacks of handwritten ledgers detail how deceased patients were diagnosed and treated for malaria but then attributed their deaths to cardiac arrest, kidney failure or fever.
But there is more than a lack of human resources and infrastructure at play. On the surface, the number of malaria cases dropped from nearly 3 million in 1995 to just over 1 million last year, according to the NVBDCP.
Madan Pradhan, the director of Odisha’s malaria program, says the mystery of these lost or misclassified malaria cases is partly because of India’s history of suppressing data, which stems from the early days of the National Malaria Eradication Program, the previous national program, in which officers would lose their jobs over poor health outcomes.
“The fear psychosis was there from then onward,” he says.
Sridhar Srikantiah, a malaria expert who worked as a consultant with the World Bank project in India, agrees. He describes a situation in which every worker in the program was living under constant pressure from his or her supervisor. “The district workers fear their bosses in the state capital. The state workers fear rebuke from the national Health Ministry, which is scared to death of not showing to the global community that India is making progress on this disease.”
‘If your whole baseline is faulty, if you are saying that no one is dying of malaria, how can you demand more resources, manpower or decentralization?’
director, National Institute of Malaria Research
Official tallies of malaria deaths are always too low, experts say, because they exclude anyone who may have died of the disease at home — which is why mortality estimates that do include these deaths, such as the one by the World Health Organization, are considered more reliable. But the wide gulf between, say, India’s official record of 1,018 deaths in 2010 and The Lancet estimate of 46,800 that year is causing some to worry that bad data are keeping resources from reaching the people who need them most.
“If your whole baseline is faulty, if you are saying that no one is dying of malaria, how can you demand more resources, manpower or decentralization?” said V.P. Sharma in an interview before his death in October 2015. He had been the director of the National Institute of Malaria Research, an autonomous institute affiliated with the Indian Health Ministry. “You can never reform the system, because you’re saying the problem isn’t even there.”
A.C. Dhariwal, the NVBDCP’s director, accepts that the numbers are flawed but insists the program’s efforts are unharmed because the system accurately captures trends in the spread of the disease.
“Malaria numbers are going down,” he says. “Our biggest challenge is continuing our efforts and consolidating the gains.”
Part 2: The World Bank
Those gains can’t come soon enough for Venkateswara Aiyyali or his neighbors in the village of Addumanda, in Andhra Pradesh. Residents of this malaria-prone area have been waiting years to receive mosquito nets treated with a durable insecticide — one of the most important components of anti-malaria strategies around the world.
But Aiyyali is among the 99 percent of Indians who don’t use the nets, known as long-lasting insecticidal nets (LLINs), which have helped other South Asian countries such as Sri Lanka and Nepal make considerable gains. While India’s goal was to distribute nets to the 250 million people most at risk for malaria by this year, the government didn’t purchase a single LLIN from 2012 through the end of 2014, according to Indian officials and World Bank and government documents.
In 2010, the Indian government hired a state-run contracting agency, Rites, to purchase supplies for the malaria program. But procuring LLINs proved a disaster. The agency ended up canceling an auction in which foreign and Indian-based companies were to bid for contracts for 10.2 million nets in 2012, as well as another auction in 2013 for 14.8 million nets — both of which would have been paid for with assistance from the World Bank and the Global Fund.
‘Several thousand people, probably somewhere around 5,000, may have died as a result of the delayed procurement of nets.’
epidemiologist who worked with the World Bank
Mosquito net manufacturers that bid for these contracts blame unreasonable demands by the government for the failure of the auctions. A representative for Vestergaard Frandsen, one of the world’s top suppliers of these nets, said Rites officials insisted on rigid specifications for how the nets were stitched and sized and then balked at the higher prices.
“Rites ‘felt’ that prices offered by all bidders were much higher than the international prices being offered by the same manufacturers in the international market,” wrote the representative in an emailed response.
Officials at Rites, however, recall heated disputes among competing bidders, which lodged formal complaints against one another that the officials say kept them from making a decision.
“There was so much bad blood being created over LLINs, so many unnecessary references and letters that made it — how do I put this? — difficult to take a decision,” says Aditya Sharma, an executive at Rites who handled procurement for World Bank–funded contracts. “When there are bullets flying around, you have to be careful.”
The canceled bids forced the Indian government to relinquish nearly $200 million in World Bank and Global Fund grants — money that could have bought enough nets for 80 million people. And because LLINs are critical to malaria intervention, the shortage devastated India’s fight against malaria and resulted in avoidable deaths, according to Allan Schapira, an epidemiologist and a former consultant with the World Bank.
“Delays in procurement in India are surrealistic,” says Schapira, who studied the effect of these delays. “Several thousand people, probably somewhere around 5,000, may have died as a result of the delayed procurement of nets.”
A 2007 internal investigation of World Bank–funded health projects in India found that Vestergaard Frandsen falsely claimed that it manufactured nets in India to receive the 15 percent price preference awarded for being a domestic manufacturer, when in fact the bed nets it provided were from China and Taiwan. More seriously, the investigation discovered that multinational pharmaceutical companies such as Bayer and Aventis seemingly formed a cartel in the early 2000s to monopolize contracts on insecticide spray — another major malaria control technique — and that executives at Rites, which was handling procurement, colluded extensively with them.
The report also exposed collusion between companies and the government for contracts for the insecticide pyrethroid. The government and World Bank agreed that they would begin asking companies to comply with an extensive requirement and registration process with the Central Insecticide Board, a government regulation agency. But according to the World Bank, international companies such as U.K.-based Agropharm revealed later that their local agents were clandestinely told they could accelerate the government registration process for $20,000.
The big leaders don’t care about people like us, because we’re so small and so far away.
villager from Addumanda who got malaria
The report’s explosive findings nearly fatally jeopardized the relationship between the World Bank and India, but eight years later, little has changed. Many of the firms named in the report, including Rites (which denied most of these charges), continue to receive government contracts, while delays and shortfalls still plague procurement. And registration with the Central Insecticide Board remains an opaque and painfully slow process that keeps out potential competitors, according to M. Palaniappan, the CEO of Shobikaa Impex, a company that has been certified by the WHO to sell mosquito nets but has been waiting five years to register with the board.
The government has, at least, started buying LLINs again. India has ordered 12.4 million nets since 2014 and plans to buy 5 million more this year. It’s not nearly enough to meet the country’s needs, but advocates say it’s a move in the right direction.
Meanwhile, Aiyyali bought inexpensive nets from a local market on his meager income. “The government isn’t doing enough to combat malaria in the villages,” he says. “The big leaders don’t care about people like us because we’re so small and so far away.”
But the cheap, untreated nets didn’t work. That monsoon, every member of his family contracted malaria.
Part 3: What it takes
When it comes to malaria control, Madan Pradhan is often cited as a superstar. Since he took charge of Odisha’s program nearly a decade ago, the rate of malaria deaths dropped by 75 percent in the state, which bears a fifth of the country’s malaria burden. Meanwhile, he pushed to get more accurate data.
In the face of understaffed clinics and mismanaged funds, he says his first move was to make the neglected program a high priority in the state secretariat. He says he persuaded the Health Ministry to increase funding for the program, from roughly $61,000 to $3 million. And he encouraged district officers and health workers to be more transparent about the deaths in their area.
“It needs a lot of advocacy and passion,” he says. “I can’t boast that all cases are captured, but the surveillance system is improving.”
To combat the hurdles in prevention and treatment of the disease, Pradhan lobbied for mosquito nets at the state and national level, he says, and managed to obtain and distribute 1.1 million treated nets in 2009. He credits this intervention, along with the new rapid diagnostic kits that were distributed to community health workers in each village to test for malaria, for the improvement. Malaria deaths in Odisha dropped from 465 in 2002 to 100 in 2011.
But Odisha is not immune to the precarious relationship between the Indian government and its international funding agencies. After the World Bank project ended in 2013, nets became scarce, and Pradhan says he has had trouble accessing the central government funds allotted to malaria.
To make matters more difficult, malaria is hardly a political priority. The 5.05 billion rupees, or $76 million, the central government allocated to the NVBDCP last year, for instance, makes up just 1.7 percent of the country’s already feeble health budget. And the government’s continued neglect of the disease means there is a perennial threat of funding cuts that could trigger a global resurgence in the disease, according to a 2012 Malaria Journal study.
Dhariwal, the national malaria program director, insists there is enough domestic funding for the malaria program, pointing out that federal contributions are matched by state governments. In fact, he says, the program is stronger than before, with new innovations and consistent midterm evaluations.
“We are not worried about the budget,” he says. “Whatever logistic support was there [from the World Bank], we are continuing from our own money with domestic support. The Indian program is resilient.”
But on the ground, the absence of basic malaria prevention resources suggests a sizable shortfall.
Paraja Dadra, a malaria-prone village of tin-roofed huts amid fields of rice in Odisha, has no community health worker. Limdas Naik, 23, a poor laborer, says his 5-year-old son, Amit, ran a high temperature for two weeks last year before a health worker showed up to check for malaria. By then, Naik’s other son also came down with a fever.
Both boys tested positive for P. falciparum, the deadliest strain of malaria in India and one of the most common, and didn’t respond to oral medication, which is effective only when administered within 24 hours of the appearance of symptoms. The Naiks paid 400 rupees, a significant chunk of their monthly income, for their children to be rushed to the government hospital in Koraput, the district headquarters. His wife slept on the streets outside the hospital for 15 days while her already malnourished sons received treatment and an IV drip.
“I feared for my boys,” says Naik as he cradles scrawny Amit, who was still recovering at the time of the interview.
If the malaria program is properly carried out, the majority of such patients should be diagnosed and treated in their villages or at the local primary health clinic. But if intervention is delayed, complications arise and patients require hospitalization.
The Koraput district hospital is meant to be the last resort for the most complicated cases, but like most public hospitals in India, it is often the first. The facility is overcrowded, filled with patients sleeping on the floors of grimy wards that have run out of beds. A lean team of nurses and doctors struggles to treat malaria cases, which pour in daily — many of them complex and serious. In July 2014, for example, hospital records showed that doctors had 73 cases of cerebral malaria, the most severe stage of the disease, which is often a sign of neglect or late diagnosis, according to The American Journal of Tropical Medicine and Hygiene.
Like Pradhan, Dr. Bijaya Kumar Mohapatra, a surgeon and the assistant district medical officer of the hospital, says there has been a decline in malaria cases and deaths in Odisha. But he also says that the hospital, which has 10 doctors and a total staff of 46, is severely short on resources.
To make matters even more complicated, a huge number of poor people opt for health care in the largely unregulated private sector, in which doctors often have not received formal medical training. These doctors have a tendency, Mohapatra adds, to overprescribe antibiotics — which can create drug resistance in the entire community — and pander to patients’ preference for injectable treatment, even when unnecessary. Private doctors are also unlikely to report malaria deaths, he says.
“We are so overstretched,” he says. “The government has created a number of posts … but the budget was not provided or clear … We recently got a dialysis machine [which is needed for treatment, since malaria can affect kidney function], but it is still sitting there in its packaging. We don’t have anybody trained to use it.”
Part 4: An uncertain future
These health system failures and the dearth of reliable data have created a vicious cycle, says Jain, the public health advocate. The lack of records limits efforts to find and stop malaria, and the high rates of illness threaten an already overburdened system, making it even harder to report the numbers and ask for adequate resources to prevent and treat the disease.
Dhariwal insists that the national malaria program is swiftly rectifying this problem. Last year the Indian government commissioned a study to gather accurate data through the National Institute of Malaria Research, which Dhariwal says will be completed in the next two years. And the Health Ministry now has its own procurement agency, the Central Medical Supply Scheme.
Until then, malaria remains a disease of the poor, with deaths tucked away in the villages and hills, far from India’s rapidly expanding cities.
“It’s a national disaster,” says malaria researcher Sharma. “The poor man has no voice.”
That continues to be the experience of families living at the top of the hill in Chintalaveedhi or among the paddies in Paraja Dadra. Balaraju Raasa sits on the dusty porch of the home they can’t afford to finish building. He says his family is still trying to recover.
“She was a good girl, a hard worker,” he says of his daughter-in-law, as her children play behind him. “But we lost all of our savings, and we lost our daughter.”
The reporting of this story was supported by the Fund for Investigative Journalism.