Mark Hoffman Kevin Stark roasted coffee in the San Francisco Bay area for a couple of years. He was diagnosed with asthma but three physicians familiar with diacetyl-related disease say results of his lung tests could signal early signs of bronchiolitis obliterans, which causes irreversible damage. Stark is now a graduate student at Northwestern University.

In 1981, a worker at the Maxwell House coffee factory in Houston died from what was reported at the time to be "bronchial asthma." She was 46, a mother of three. In 1982, another worker at the plant died — from the same thing.

The deaths were not recorded in a national database of occupational illnesses that could have alerted public health specialists to a potential problem. Nobody linked the sicknesses to the workplace.

Several years later, in 1990, workers at the same plant wondered if they were being exposed to something hazardous in the air. Coffee dust? The chemical used to decaffeinate coffee? A lot of workers had chronic coughs. Quite a few, it seemed, were getting cancer while churning out Maxwell House coffee, known by its popular slogan, "Good to the Last Drop."

When scientists from the U.S. Centers for Disease Control and Prevention came to investigate, they found the workers were right. Researchers pulled the death certificates of 67 employees who had died during the previous dozen years and discovered elevated cancer rates among a segment of workers at the plant. Especially prevalent: lung cancer.

The federal agency could not pinpoint an exact cause but recommended Maxwell House put some engineering controls in place to "control hazards to the extent feasible." Officials also suggested the company monitor workers' health and inform them of the dangers of coffee dust.

The file was closed. No alarms were sounded.

Workers at another Houston roasting and processing plant had also worried about their health and asked the CDC in the 1980s to examine their concerns, according to an investigation by the Milwaukee Journal Sentinel.

Complaints were similar — some workers coughed excessively; others were short of breath; eye, nose and throat irritation was common.

And workers from at least two additional coffee plants in other states would eventually seek help from the CDC. What could be causing severe and sometimes fatal lung and respiratory diseases? How widespread were the problems?

Nearly 35 years later, as the coffee industry booms with boutique roasters and more workers than ever are at risk — most of them unknowingly — the questions remain unanswered.

"We don't have a system in place in the United States for connecting the dots," said Robert Harrison, a physician and occupational medicine specialist at the University of California, San Francisco Medical Center.

A system that tracked patients by occupation could have helped doctors spot and prevent — decades ago — what the Journal Sentinel has now uncovered: Workers from multiple coffee plants with signs of respiratory illness that medical experts suspect could be linked to their jobs roasting and grinding coffee.

The discovery is part of an ongoing investigation, Gasping for Action, that has exposed how diacetyl — a chemical known for destroying lungs of microwave popcorn workers in the early 2000s — also poses risks to coffee workers and e-cigarette users across the country.

Although more than a dozen epidemiological and animal studies over the last 15 years have concluded that diacetyl devastates the lungs — and experts deem it one of the most toxic chemicals they have ever seen — government regulators and coffee companies have done little to protect workers from it.

Despite huge advances in medicine and data collection and analysis in recent decades, the nation's workplace-illness surveillance system remains incapable of detecting clusters of medical conditions related to specific jobs, the Journal Sentinel has found.

The CDC's National Occupational Mortality Surveillance database lumps coffee roasters with meat, fish and tobacco workers. The coffee industry as a whole is coded with seafood and other miscellaneous food operations.

Federal agencies don't require states to include occupational information on death certificates. States can volunteer to collect the information and share it with the National Institute for Occupational Safety and Health — known as NIOSH — the CDC's research arm. Only 17 states do.

As a result, deaths are not traced by specific job or even industry.

Nor are illnesses. The U.S. Bureau of Labor Statistics, also tasked with tracking workplace injuries and illnesses, relies on data supplied by employers. Studies show that chronic illnesses, especially, are under-reported. And that system, too, uses the same broad coding categories for jobs and industries.

Public health experts have mounted an effort in recent years to have occupation and industry included in electronic medical records, a move the U.S. Department of Health and Human Services has not adopted.

“We’re floundering around with these chemicals in the workplace as if it was the 1830s,” Allen Parme said.

Meanwhile, a handful of fairly simple solutions exist to protect coffee workers. Air sampling, improved ventilation and medical monitoring could significantly reduce risks to the more than 600,000 people in the United States who work around coffee every day.

"We're floundering around with these chemicals in the workplace as if it was the 1830s," said Allen Parmet, an occupational medicine specialist credited with helping identify the lung disease in the popcorn workers. "Unless the patient comes in and says, 'I'm a coffee worker, I'm exposed to diacetyl, I potentially have bronchiolitis obliterans and here's the paperwork' — unless that happens — nobody gets it. They'll just treat him for asthma or smoker's cough.

"If we had the will, we could fix it."

•••

Raquel Rutledge Casey Blanche undergoes lung function testing in June. Blanche has roasted coffee for more than 11 years, most recently at Just Coffee Cooperative in Madison before moving to Singapore in July. Blanche,36, had no symptoms but doctors say results of one of the tests indicate possible early airways obstruction. They suggest he be closely monitored.

Diacetyl forms naturally during coffee roasting and is released in high concentrations when beans are ground and storage bins are opened. It is also made synthetically and added to foods and beverages — including some flavored coffees — to add a buttery taste.

Five coffee roasters— from cafes to mid-size facilities — agreed to share their medical tests with the Journal Sentinel and have the results reviewed by three doctors with experience in diacetyl-related illnesses. Of the five workers, four had lung tests or symptoms consistent with hazardous exposure to the chemical, according to the doctors. Further testing would be required for a diagnosis.

As with the earlier cases from Maxwell House and other plants, the connection between coffee roasting, diacetyl and the workers' lung issues had not been recognized by their doctors, employers or public health officials.

Test results from a 30-year-old roaster, Kevin Stark of Chicago, worried all three doctors.

Stark worked in a mid-size roasting facility in the San Francisco Bay area for about two years, roasting between 1,000 and 2,000 pounds a day. Part of the beauty of the job, he said, was using his sense of smell to create unique roasts. He had his nose in a lot of coffee every day.

"I definitely was very tactile with my roasting," said Stark, now a graduate student at Northwestern University. "It's a sensual part of the craft. ... It is a little troubling to think there is more to it than just simple-smelling caramel."

Each doctor concluded that Stark has airway obstruction consistent with the early stages of bronchiolitis obliterans— the same disease that sickened and even killed microwave popcorn workers.

Stark's tests could also point to asthma, which is what his doctor diagnosed a couple of months after Stark was hired at the roastery. Over the years, Stark thought he might have allergies, but they seemed to worsen soon after he started working around coffee. He never suspected he had asthma. And he had never heard of bronchiolitis obliterans.

The difference is critical.

Bronchiolitis obliterans is a little-known and rarely diagnosed disease marked by a buildup of scar tissue in the lungs that restricts airflow. Diacetyl is known to attack, inflame and virtually obliterate the bronchioles, the lung's tiniest airways, causing scarring. Damage is irreversible. Diacetyl also can cause a range of less deadly lung diseases and injuries that experts say are often misdiagnosed as asthma.

The doctors recommended that Stark seek further testing.

"This could be the harbinger of major problems and he should be followed closely," said James Stocks, a doctor in Tyler, Texas, who in 2012 detected bronchiolitis obliterans in five workers at a coffee plant there. With bronchiolitis obliterans, he said, "what is lost is gone forever."

•••

Family photo/Archives.com Norma Bowers worked for more than a decade at the Maxwell House coffee plant in Houston before she died in 1981 at age 46. Her cause of death was listed on her death certificate as asthma.

Norma Bowers cherished her job packaging coffee at the Maxwell House plant on Harrisburg Blvd., just two miles from her home on Houston's southeast side. It was the 1970s. More and more women were working and Bowers was proud to help her husband, a cargo worker at Braniff Airlines, support the family.

That's how Bowers' son and daughter — then teenagers — saw it.

Nick de la Torre/Houston Chronicle Maxwell House, a brand of the Kraft Heinz Company, was one of the country’s leading coffee sellers in the 1970s, known by its popular slogan “Good to the Last Drop.” Two workers at one of the company’s Houston plants died of asthma in the early 1980s. Company representatives would not say what the company does today to protect workers from respiratory disease.

Their mom didn't seem to mind the rotating shifts or repetitive work. Before heading out the door every day, she pulled on her blue pants and matching button-up shirt with Maxwell's signature coffee cup logo. And she tucked a bottle or two of Primatene Mist inhaler in her pocket.

"She never complained, she just did the work," said her son, Darrell Bowers, now a railroad engineer and real estate broker in Houston. "It was a good-paying company and she was dedicated."

The inhaler was supposed to help Norma Bowers get through the day. She was having trouble breathing and her condition seemed to get worse. Never much of a smoker, her doctors thought it was asthma. She wasn't aware that being around coffee — the chaff, the green beans, the dust — could be triggering or exacerbating her breathing problems.

Although coffee dust had been a suspected respiratory irritant since at least the 1950s, little was done to minimize its impact on plant workers. Bowers was provided a paper mask to help keep dust out of her face.

She couldn't know at the time that simply breathing the fumes from the roasted and ground coffee every day could destroy her lungs. Few in the industry had ever heard of diacetyl. The buttery-smelling compound wouldn't surface as a lung-slayer for another 20 years.

Bowers' illness progressed over the more than 10 years she spent at the plant. Eventually she would come home from work and need oxygen. She could no longer bowl in her league. Once a swimmer, at 46, her 5-foot-9 body was slowly suffocating.

On Sept. 25, 1981, Bowers passed out while at work. She was rushed to a hospital, where she died.

"It was a very frightening thing to see," said Darrell Bowers, who was in his early 20s at the time.

Norma Bowers' daughter, Joan Bowers, who was a couple of years younger than her brother, remembers the day clearly. She was living at home and saw her mom before she went to work.

"I got a chance to say, 'Bye, see you later. Have a good day.' And that was it," she said. "It was such a shock to me, for someone to go to work that morning and not come home."

Bowers' dad was on jury duty that day.

"He walked in the door and I was the one that had to tell him that mom passed," Joan Bowers said. "He just had to take a seat and get himself together."

Medical experts familiar with diacetyl-related disease reviewed Bowers' autopsy for the Journal Sentinel. The newspaper obtained the report from the Harris County, Texas, archives.

Gary Porter Emanuel Diaz de Leon was diagnosed with bronchiolitis obliterans after working at a coffee roasting facility in Tyler, Texas. Doctors say Diaz de Leon, a nonsmoker, at age 41 had the lungs of a 70 year old.

Video: Emanuel Diaz de Leon talks about how lung damage from diacetyl has affected his life

With the limited information included in the decades' old file, the experts could not definitively say whether diacetyl played a part in Bowers' death. They suspected it might have, but without pictures and additional medical history, they couldn't say for sure.

Bowers' lung illness resembles that of Emanuel Diaz de Leon, who worked in a different Texas city — 30 years later. Diaz de Leon's lungs were severely damaged within 18 months of working at the Distant Lands coffee plant in Tyler.

Stocks, a pulmonologist, thought it odd when Diaz de Leon showed up in his medical clinic huffing and puffing in December 2011. He was 41, an active soccer player and nonsmoker, but had the lungs of a 70-year-old.

Stocks asked Diaz de Leon where he worked and requested he bring in the company's Material Safety Data Sheets, which list the potential hazards of the ingredients in use in the plant. When Stocks saw they included diacetyl, he was curious. He remembered reading in medical journals about injuries popcorn workers had suffered from diacetyl in the butter flavoring chemical — ultimately giving rise to the term "popcorn lung."

A lung biopsy confirmed it. Diaz de Leon had bronchiolitis obliterans. Stocks anticipates he will die well before his normal life expectancy.

•••

Clues have been cropping up for decades, signaling something toxic is assaulting coffee workers' lungs.

Nearly three dozen studies on coffee workers and respiratory illness date to at least 1958, a review by the Journal Sentinel found. Some focus on the green beans, others the dust. One study, done at an Ohio plant in 2001, mentions "volatile organic compounds" from the flavoring liquid added to some of the coffee.

Researchers from NIOSH found potential respiratory hazards such as ethanol, propylene glycol, benzaldehyde and furfuryl alcohol in the air at Euclid Coffee Co. in Cleveland. The report makes no mention of diacetyl, also a volatile organic compound. It wasn't on their radar; there is no indication that they tested for it.

The government agency recommended the company increase ventilation around the flavoring area. In doing so, the "risk of respiratory irritation could be greatly reduced," they wrote.

Once again, the file was closed. No alarms sounded.

In order to know whether elements such as diacetyl might be threatening workers, employers need to have air samples taken from areas around the workers and in their breathing zones and have them tested. Historically, that's seldom done in the coffee industry.

In September, after a Journal Sentinel investigation discovered high levels of diacetyl in two Wisconsin roasteries that do not use added flavors, the CDC posted a national warning to employers and workers about the potential dangers of diacetyl in coffee plants.

The CDC outlined various ways workers could be protected. The National Coffee Association — which had initially denied that naturally occurring diacetyl could be a problem — vowed to alert its members and encourage them to monitor their workplaces.

Coffee factories have little incentive to test the air, since the U.S. Occupational Safety and Health Administration does not have any regulations limiting workplace exposure to diacetyl or 2,3-pentanedione, another lung-damaging compound released in coffee processing.


OSHA has known of the seriousness since at least 2006, when clusters of microwave popcorn workers became ill, but has failed to implement regulations. NIOSH, meanwhile, has a draft proposal for a recommended safety level, but it has not moved forward. The agency has been saying for more than a year that the proposal is in the final review stage.

Adequate ventilation is a key factor in reducing occupational exposure to chemicals such as diacetyl. Other engineering controls that can mitigate risk are enclosing the roasting and grinding processes, increasing air exchange and wearing respirators, according to NIOSH.

It's unclear what systems Maxwell House has in place today to ensure worker safety. Company executives would not answer questions regarding workplace safety, air monitoring or Bowers' death.

Michael Mullen, senior vice president for corporate and government affairs at the Kraft Heinz Co., parent company of Maxwell House, responded to a detailed list of questions with: "No comment."

Both the Teamsters and the United Food and Commercial Workers unions, which together represent workers from about a dozen coffee processing companies, have tried to get a handle on the scope of the problem — with little success.

An attorney for the food workers union sent a letter in August to two large coffee processing operations in Texas — Atlantic Coffee Solutions and Farmer Bros. Co. — seeking information on how the companies are protecting workers from respiratory illness.

It's unclear from Atlantic Coffee Solutions' response whether the company was ignoring or unaware of the CDC's September warning that fumes from roasting and grinding coffee — not just added flavoring — could expose workers to diacetyl.

Company representatives did not return phone calls and emails from the Journal Sentinel seeking comment.

"At this time there has been no exposure monitoring for diacetyl as there are no flavorings and/or additives in the processing of our coffee used," the human resources director from Atlantic Coffee Solutions responded to union officials in an Oct. 23 email. "There is no known diacetyl (or similar chemical ) at ACS and thus no medical surveillance of employees is being conducted."

Workers have not been complaining of respiratory illness, the director added. Atlantic Coffee Solutions now operates at the same site where Norma Bowers worked. Maxwell House sold the plant in 2006.

Studies of workers with severe lung disease tied to diacetyl showed about a quarter of the employees never noticed symptoms before learning of their irreversible illnesses.

Representatives from Farmer Bros. had a similar response and denied the union's request for any information regarding workers' exposure to diacetyl. That response was sent about a week before the CDC warning was issued.

A spokesman for the company declined to comment to the Journal Sentinel.

J.M. Smucker Co., the parent company of Folgers, acknowledged the hazards posed by diacetyl in an email to the Journal Sentinel.

"While we do not use diacetyl as an ingredient in coffee, including flavorings, we do recognize the potential employee safety risk presented by diacetyl that can occur naturally through the roasting process," a spokeswoman wrote. "While this employee safety risk is minimal we nonetheless employ — from roasting to packaging — comprehensive policies, procedures and equipment to ensure employee safety at our coffee production facilities."

The company did not respond to a request for more detailed information or answer questions.

Starbucks did not respond to repeated emails and phone calls from the Journal Sentinel.

•••

Timeline of an investigation In February, the Milwaukee Journal Sentinel examined how five workers in a Tyler, Texas, coffee roasting facility came down with a severe and irreversible lung disease called bronchiolitis obliterans. One was put on the waiting list for a lung transplant. Their illnesses were detected by a pulmonologist who recognized a chemical they were using to flavor the coffee: diacetyl. That chemical — known to be toxic when inhaled — is also found in e-liquids commonly used in electronic cigarettes and other vaping devices, the newspaper found. A scientist in Greece tested dozens of flavored e-liquids and found diacetyl in about 70%. The newspaper exposed another little known fact: Diacetyl is also formed naturally in unflavored coffee beans during the roasting process. And it's released in higher concentrations during grinding.

The Journal Sentinel hired an industrial hygienist to test the breathing zones of roasters and grinders at two Wisconsin roasteries, whose owners agreed to let the newspaper sample the air. The testing was among the first of its kind to quantify the concentrations of diacetyl in coffee roasting facilities that do not use added flavors. Results showed levels at both operations nearly four times the safety limits recommended by government scientists. Microwave popcorn workers exposed to similar levels suffered serious lung damage. Scientists from the CDC's research arm, the National Institute of Occupational Safety and Health, followed with a full health hazard evaluation at one of the Wisconsin roasteries. That report is scheduled to come out in the coming weeks. In September, the CDC posted a notice warning coffee processing workers nationwide of the dangers of diacetyl. The agency has since launched evaluations in roughly 10 additional coffee processing plants to gather data about health risks facing workers in the industry. The first report is expected in early 2016.

The Journal Sentinel tested five locally made e-liquids for diacetyl and its chemical cousin, 2,3-pentanedione, considered equally as toxic. Results showed all five had both chemicals and one of the flavors had extremely high levels. The investigation, published in October, also revealed that the testing done by the e-liquid industry isn't typically sensitive enough to detect the chemicals at levels that could be harmful. A study by researchers at Harvard University published in December found diacetyl in 39 of 51 samples and resulted in scientists calling for urgent action to address the issue. The U.S. Food and Drug Administration is considering regulating e-cigarettes, but the proposed rules have not been finalized.

The Journal Sentinel unearthed the long-forgotten deaths of a pair of coffee workers in Texas and found lung problems persist in today's workers. The newspaper identified five coffee roasters from multiple coffee plants — from cafes to midsize facilities — willing to undergo lung function screening and share results with the newspaper and doctors familiar with diacetyl-related diseases. Four of the five had symptoms or test results consistent with hazardous exposure to diacetyl, according to the doctors. The newspaper's investigation, published in December, also uncovered a flawed national occupational illness surveillance system that fails to detect emerging sicknesses in the workplace. Show More

Veteran occupational medicine specialists say they're not surprised that alarms didn't sound sooner regarding the coffee industry.

They say the nation's system for detection is inadequate and are pushing for fixes. One improvement in particular, they say, could help tremendously: including a person's occupation in their electronic medical records.

"It's just amazing to me that people spend half of their waking life at work, yet somehow it's not included," said Letitia Davis, director of the occupational health surveillance program with the Massachusetts Department of Health & Human Services.

Including occupation and industry information in electronic health records would allow public health specialists to detect newly surfacing problems within specific jobs nationally, as well as allow physicians to better diagnose and treat their patients.

"When there is new or emerging infectious disease there is notification," Davis said. "We don't have anything parallel to that in occupational health."

The CDC sends alerts to health departments in every state when outbreaks of the flu, norovirus or E. coli surface, for example. Not so for occupational illnesses. It can take months, years or longer for word of workplace diseases to spread.

"We have made the argument that if we could have more tracking of industry and occupation in health and mortality records, certainly that could help us, versus having to wait for huge groups to be ill, " said Christina Spring, a spokeswoman for NIOSH. "We are not there yet."

Even if such a provision were required, without more specific coding it would suffer from the same pitfalls as the other data tracking systems.

Asbestos plagued construction workers and others for decades after studies in the 1970s started linking the fireproof building material to serious and sometimes fatal lung disease. Regulators and the industry were slow to act, asking — as those in the coffee industry are now — if asbestos is so toxic, then where were all the dead workers?

Parmet, the doctor who identified the early cases of lung disease in the popcorn workers, said genetic factors likely play a role in who does and does not get the disease.

"Why doesn't everybody get lung cancer from smoking?" he said. "Not every coal miner gets black lung. Not everybody who works with asbestos gets asbestosis and ... not everybody gets bronchiolitis obliterans when they're exposed to diacetyl."

Ultimately, in the case of asbestos, clusters of sicknesses surfaced and lawsuits with hefty jury awards sparked changes.

Chris Potenza, a New-York-based lawyer who specializes in asbestos cases, said the health dangers and consequences proved far larger than most anyone at the time imagined.

"It's now 2015 and there are as many cases as there were 25 years ago," Potenza said.

Organizations such as the American College of Occupational and Environmental Medicine and the Association of Occupational and Environmental Clinics have been pushing for years to have occupation and industry included in electronic health records in hopes of preventing another asbestos-type epidemic.

Kathy Kirkland, executive director of the association of clinics, said having such information in a system could assist a physician treating a patient with uncontrolled diabetes, for example. The health of a diabetic patient could be heavily influenced if they work a job with varying shifts resulting in irregular eating and sleeping patterns. If that information were in the system, Kirkland said, it could cue the doctor to ask about shift work.

"Linking occupation and diagnosis is seen as a powerful tool for prevention," she wrote in a December 2014 letter to the acting U.S. assistant secretary of health.

The provision was being considered as part of the larger phasing in of electronic health records. It was dropped from the latest plan unveiled in September by the Department of Health and Human Services.

Several pilot studies, including one from 2010-'13 at a clinic outside Boston, have proven the benefit of including occupation in electronic medical records. The data collected helped doctors spot sickness in house cleaners.

"We learned our cleaners are definitely at risk from occupational asthma, be it from bleach or ammonia," said Laura Brightman, a physician at the Cambridge Health Alliance, an affiliate of the Harvard Community Health System.

Brightman now refers those patients to a pulmonologist who can dig deeper and offer specialized treatment. And the clinics do outreach so those new to the industry will know to take precautions.

•••

Mark Hoffman Chris O’Neal roasted coffee at what is now Colectivo on N. Humboldt Blvd. in Milwaukee for several years ending in 2012. O’Neal, 35, has been diagnosed with asthma and has symptoms doctors say are consistent with hazardous exposure to diacetyl.

Had Chris O'Neal known coffee roasting and grinding could wreck his lungs, he definitely would have taken precautions, he said.

The 35-year-old Bay View resident roasted coffee at what is now Colectivo on N. Humboldt Blvd. in Milwaukee for several years ending in 2012. O'Neal, an elite runner who has never smoked, noticed recently he has extreme shortness of breath when running. His 5-kilometer times rose significantly in the last couple of years, despite consistent training and healthy eating.

O'Neal's lung function tests looked fairly normal, however. Most doctors would be baffled. One diagnosed him with asthma and prescribed a steroid inhaler.

Robert Miller, a pulmonology specialist and an associate professor of medicine at Vanderbilt University School of Medicine, has another hunch about O'Neal.

Miller heard similar stories from dozens of soldiers returning from Iraq — many exposed to a sulfur fire — who could not pass the military's standards for the 2K run test. They complained of severe shortness of breath and suspected something was gravely wrong. Their pulmonary function tests looked fine, too.

"His story sounds very characteristic of what we've seen," Miller said of O'Neal.

Miller performed lung biopsies on the soldiers, who were desperate for some type of diagnosis as the failure to perform physically was threatening their jobs.

His findings: bronchiolitis obliterans in 38 of the 49.

"I had never biopsied a patient with normal pulmonary function testing and CT scan, but over time we recognized a pattern," Miller said. "You have to pay attention to your science."

How we reported this story The Milwaukee Journal Sentinel identified five coffee roasters who agreed to have and share results of lung function screening and other medical records with the newspaper and doctors familiar with diacetyl-related disease. Tests included spirometry, oscillometry and lung volume, as well as diffusion capacity. Results were reviewed by:

Robert Harrison, a physician and occupational medicine specialist at the University of California, San Francisco Medical Center, who was involved with the detection of bronchiolitis obliterans in microwave popcorn workers. He has diagnosed and treated thousands of workers with occupational illnesses.

Allen Parmet, retired preventive medicine physician and occupational health specialist from St. Luke’s Hospital in Kansas City, Mo. Parmet is credited with helping identify some of the first cases of bronchiolitis obliterans in microwave popcorn workers.

James Stocks, a pulmonologist with the University of Texas Health Sciences Center. Stocks spotted the cases of bronchiolitis obliterans in the five coffee workers at the Distant Lands plant in Tyler, Texas.

The doctors identified red flags in four of the five coffee workers, from definite obstructed airways to unusual patterns in flow suggestive of early airways disease.

The Journal Sentinel also reviewed records from the National Institute of Occupational Safety and Health obtained through Freedom of Information Act requests, the U.S. Occupational Safety and Health Administration, U.S. National Library of Medicine, U.S. Bureau of Labor Statistics, the National Center for Health Statistics, the U.S. Census Bureau as well as state health departments, trade journals, medical examiner’s reports, obituary archives and other reports. Show More

About This Project

The biopsy results added to the puzzle. People with symptoms can have normal tests but still have the disease. People with abnormal tests can have no symptoms but also be sick.

In some cases, the symptoms can come gradually; in others, suddenly.

There are no perfect, noninvasive tests. Lung biopsy is the most accurate way to confirm the disease. However, regular testing, every six months or a year, can detect declines in lung function that are greater than normal.

"People who are in occupations with inhalation risk need serial pulmonary function testing," Miller said. "If you are a coffee roaster and you've got shortness of breath, and we know that diacetyl leads to disease, the best way to deal with it is with prevention.

"These places need to be ventilated and the workers need appropriate respirator protection."

Terri Schnorr, director of NIOSH's division of surveillance, hazard evaluations and field studies, called coffee roasting and processing "clearly an emerging issue that we are recognizing."

"We want to track it down and see what's really going on to determine causes and eliminate them," said Schnorr, a 33-year veteran of the department.

NIOSH is in the process of evaluating about 10 different coffee facilities, from those in cafes to large-scale operations, in the wake of Journal Sentinel reports about diacetyl and coffee.

Parmet, the occupational medicine specialist, says it's about time.

Parmet wanted to test coffee workers in the mid-2000s. He even had friends in the safety division at a Folgers plant in Kansas City. But nobody would agree to it.

"We just flat out don't know what's going on," he said. "People are flushed out of the system. They get sick and leave work, nobody has any clue.

"If you don't look, you won't find."

John Diedrich of the Journal Sentinel staff contributed to this report.

twitter.com/RaquelRutledge rrutledge@journalsentinel.com