Five men, all sugarcane workers and all sick with chronic kidney disease, were lying in hammocks outside the gates of the company in Chichigalpa, Nicaragua, that once employed them. Their friends and families were by their side. The workers did not have access to proper treatment, and they were dying.
"It was the saddest protest I have ever seen in my life," said Jason Glaser, founder, president, and chief executive officer of La Isla Network, an organization "dedicated to ending chronic kidney disease of undetermined causes among workers and their communities worldwide."
That was in August 2007, and the 29-year-old Glaser was in Central America to make a documentary about the banana industry. He hadn't planned on being at the sugarcane workers' protest, but was steered toward it by banana workers, who Glaser was talking to because they were suffering from high rates of sterility.
The protesting sugarcane workers were at the heart of an epidemic that is now known — by different doctors and research groups studying the problem — as chronic kidney disease of unknown etiology or Mesoamerican nephropathy.
An estimated 50,000 people around the world without any of the usual risk factors for chronic kidney disease have died from kidney failure, and Central America is one of the hardest-hit areas, accounting for about 20,000 of these deaths.
Heat Stress Nephropathy
The banana workers explained that although "we may be sterile, the sugarcane workers are dying," Glaser told Medscape Medical News. Intrigued, he and his crew traveled to Chichigalpa, where they found the workers and others facing off against a line of police. Glaser's producer was detained briefly by the authorities, but was released after about an hour. "It was a very tense situation," he said.
The story might have ended there, with a sad and scary tale to tell back in the United States, but Glaser was drawn by the very people who seemed to want to keep him out.
Burson-Marsteller, a public relations firm working for Ingenio San Antonio, the company that employed the sugarcane workers, called the next day to say, "there's nothing to see here," he explained.
The call intrigued Glaser and his team, who became even more determined to find out what was going on.
They got in touch with the Center for Research in Health, Labor, and the Environment at the National Autonomous University of Nicaragua-León (CISTA-UNAN). At the time, Glaser knew little about kidney disease, and even less about medical research.
The doctors and researchers in Central America did not dismiss the inexperienced team and were happy to talk about what was going on.
And that was when Glaser's path took an unexpected turn. He didn't just want to document what was happening — he wanted to help solve it.
"I'd been a filmmaker long enough to know that you could be a flash in the pan with a movie at Sundance, but structurally, very few things get solved that way," he explained. "I realized we needed to get some funding, get some data, and develop a network to really address this."
Things took off from there. For the next 10 years, Glaser raised money through La Isla Network to fund research into the epidemic. His name is now on a dozen publications, which is, he admits, quite a few for someone who didn't previously know what a medical journal was.
"I respect advocates and think they do an important job, but they are not scientists," said Marc Schenker, MD, from the Department of Public Health Sciences at UC Davis Health in California, who specializes in occupational and environmental health.
"I have been in situations where advocates were loose with the truth in order to make a case," he told Medscape Medical News.
This has not, however, been his experience with Glaser. The pair crossed paths because of Dr Schenker's work on heat stress and kidney function in agricultural workers in California.
"I really admire Jason. He has passion and enormous energy, and he has a respect for the science," said Dr Schenker. "He has generated funding of various types and he brings people together. It's hard for me to think of someone else like him."
And heat stress nephropathy, like other occupational and environmental health issues, can use people like Glaser.
"Getting nephrologists interested is difficult," Dr Schenker explained. "They are not generally involved in occupational health issues, and nephrology doesn't have the epidemiologic background that some other fields have."
Although Glaser is moving further into policy and research — he is currently pursuing a PhD in policy and epidemiology at the London School of Hygiene and Tropical Medicine — he has not forgotten the people at the end of the line. Intervention remains one of his primary goals, even if all of the pieces of the research puzzle have not yet fallen into place.
La Isla Network works directly with governments and companies to make policy changes that help workers at risk for the disease, and Glaser is pleased to report that things have gotten better for some sugarcane workers in El Salvador, Nicaragua, and other countries because of various intervention programs.
Even Ingenio San Antonio, the company Glaser initially encountered in Nicaragua, is now working with La Isla "to design a scalable and measurable occupational intervention," he told Medscape Medical News.
But there is still a lot to be done to ensure the efficiency and quality of these efforts. "We need a coordinated strategy. As advocates and researchers, we need to let go of ego and territorial discussions so that we can go to the big foundations and say, 'here's the plan,' " he said. "We must always remember why we are doing this and who it is for."
Medscape Medical News © 2017 WebMD, LLC
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Cite this: Kidney Failure Deaths Move Filmmaker to Raise Research Funds - Medscape - Aug 18, 2017.