BRONX, N.Y. – Patricia Rouse believes officials could have prevented the loss of more than a dozen lives if they had “properly” investigated her brother’s death.

In April 2015, James Rouse died from Legionnaires’ disease, a severe form of pneumonia caused by the waterborne bacteria legionella. The New York City Department of Health and Mental Hygiene declared the 52-year-old’s death an isolated case, while the mayor said one death “wouldn’t usually spur a city investigation.”

Four months later, five water sources tested positive for legionella in the South Bronx school where Rouse taught music. By then, it was too late. An outbreak in the area had caused 16 people to die.

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“It makes me angry every time I think about it,” said Patricia Rouse, an attorney who lives on Long Island. She believes city officials should have pursued how and why her brother contracted the disease.

James Rouse’s case illustrates how questions about the relationship between health and water contamination often go unanswered.

Many Americans don’t always know what’s in their water – and even when they do, the science can’t always make definitive connections between tainted water and health problems. Health officials, from the federal level down to the local authorities, also face budget constraints that can limit how they investigate, monitor, report and treat water contamination.

“More people are affected by contaminated drinking water than is being reported, and there are many U.S. communities facing a health crisis because of bad water,” said Erik Olson, health program director at the Natural Resources Defense Council, a nonprofit international environmental advocacy group.

IOWA ANGLE Caffeine and a drug used to regulate blood sugar levels for people with Type 2 diabetes wash down the drain every day to become some of the most common unregulated contaminants in Iowa’s public drinking water, a 2016 IowaWatch investigation revealed. The presence of these contaminants is so miniscule that what a drinking water consumer takes in is fairly minimal. But federal government officials are concerned about them because the risks of chronic ingestion of these contaminants are unclear, the result of a lack of research to determine potential health risks for humans. Read more here. — IowaWatch.org

The latest U.S. Environmental Protection Agency estimates indicate that tap water causes 16.4 million cases of acute gastrointestinal illness each year, but that’s only a small portion of what’s really happening. Government officials don’t necessarily have the data to show the full picture. For example, the Centers for Disease Control and Prevention gathers data about waterborne disease outbreaks, but not all states report them.

A News21 analysis of EPA data shows 63 million people were served by water systems that violated federal standards two or more times, sometimes for lead, copper, arsenic and cancer-causing poisons. These contaminants can cause a wide range of health problems, from liver and kidney damage to birth defects.

But mystery still surrounds the effect tainted drinking water has on health. Even when officials can identify problems in the water, there’s often confusion and disagreement about how to treat it. Critics also say officials don’t act quickly enough to identify problems and alert the public to contamination.

“The public’s health is put at risk every day because often, we don’t know exactly what we’re drinking,” said Robert Bowcock, water consultant to environmental advocate Erin Brockovich.

BACTERIA AND PARASITES

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Water experts do have a handle on how certain contaminants affect health. Some of the regulated contaminants sickening people in the U.S. include naturally occurring bacteria and parasites such as giardia, cryptosporidium and legionella, which are responsible for the majority of waterborne disease outbreaks.

The latest CDC report on waterborne diseases shows 32 widespread outbreaks happened between 2011 and 2012. These outbreaks resulted in at least 102 hospitalizations and 14 deaths.

Legionella, a bacteria found naturally in water, was responsible for 66 percent of these outbreaks. The U.S. Water Quality and Health Council describes it as “public health enemy number 1.” The bacteria causes Legionnaires’ disease, a respiratory illness from which 1 in 10 people die, according to the CDC.

People usually contract Legionnaires’ when they breathe in water mist contaminated with legionella, or when drinking water goes down the wrong pipe and into the lungs. The CDC reports that 6,000 cases of Legionnaires’ occurred in the U.S. in 2015, and the number of cases has risen since 2000. However, the CDC says the actual number may be higher because health care providers often misdiagnose Legionnaires’ as pneumonia.

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New York resident Lori Clark, 54, initially thought she had the flu when she began feeling achy and developed a cough. She didn’t seek medical treatment for a week, and that’s when doctors diagnosed her with Legionnaires’ disease.

“Put a straw through your lips, plug your nose and try to breathe – that’s what it’s like for me every day,” she said.

While legionella attracts headlines across the country, health experts say some other bacterial contaminants also have major health implications.

People with weakened immune systems may develop serious, chronic and sometimes fatal illnesses if they drink water contaminated with cryptosporidium or giardia. Water treatment experts said both parasites are resistant to chemicals used to treat water and that’s why they affect the health of so many Americans.

The CDC says about 748,000 cases of water-linked cryptosporidiosis, which causes diarrhea, happen every year, but officials believe it’s severely underreported.

NATURALLY OCCURRING AND MAN-MADE CONTAMINANTS

Connecticut resident Jessica Penna’s well water tested positive for arsenic twice the recommended limit.

“It started with my hair falling out in gigantic clumps,” Penna said. “I was losing pigmentation in my skin. My joints were bothering me. I was tired all the time, fatigued.”

Long-term arsenic exposure can lead to skin disorders such as pigmentation or lesions, as well as cancer, according to the World Health Organization.

Arsenic is among the naturally occurring contaminants often found in water. Others include radium and uranium, which are linked to cancer and kidney disease.

But some of the contaminants show up in the water because people put them there. Mining and construction can release large amounts of heavy metals, such as lead, into water sources. Children who drink water contaminated with lead may develop learning disabilities. Numerous studies indicate that children exposed to high lead levels are more likely to perform worse academically and enter the criminal justice system. Even at low levels, exposure to lead over long periods of time can cause significant damage.

Farmers using fertilizers and manure on their crops also can contaminate water with nitrates. Babies who drink formula made with nitrate-contaminated water are at risk of blue baby syndrome, a condition in which the blood struggles to carry oxygen, turning their skin a blue-gray color.

SCIENTIFIC CONNECTIONS

It’s often difficult to make a definitive link between certain illnesses and contaminants found in drinking water.

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For example, the EPA has classified perfluorooctane sulfonate, a chemical often found in cleaners, carpets, firefighting foams and nonstick surfaces such as Teflon, as an “emerging contaminant,” or a chemical the EPA is researching and monitoring to determine its human and environmental effects. Researchers have linked the chemical to some cancers, high cholesterol and fetal development complications.

The U.S. Agency for Toxic Substances and Disease Registry has conducted studies to evaluate how the chemical may cause birth defects and delayed development. However, there is no conclusive evidence.

Chris Shuey, a researcher at the Southwest Research and Information Center, studies uranium contamination in drinking water. He explained why finding these links is such a challenge.

“Health researchers live in a world of gray. It’s never black and white,” he said. “One of the biggest challenges is that you need a lot of people over a fairly significant period of time to assess them, and then you need additional time to analyze all of the data, which costs a lot of money.”

Shuey said because people are exposed to so many potential environmental contaminants, it’s hard to point the blame at one specific source. “We have to go over so many medical records, analyze so much data and carry out surveys before we can even begin to make a link,” he said. “There are no hard-and-fast answers, and that’s why people get frustrated.”

Sometimes, entire communities say they’re left in the dark. A group of community activists in the rural city of Waycross, Georgia, want answers about why they’ve seen an increased rate of childhood cancer and mysterious health problems.

They believe residents’ health problems are connected to local industries, including a transportation company allowed to dump chemicals in the area. Waycross officials said the water is clean, and the state won’t designate the area as a cancer cluster. Since the residents can’t definitively prove the water has led to health problems, they said they’ve received little help in trying to clean up the contamination.

DATA LIMITATIONS

Thousands of contaminants lurk in America’s water systems – from brain-eating amoeba to cancer-causing chemicals such as chromium-6 – but the EPA only regulates about 100 of them. That means health officials in states don’t test or report on many contaminants that sicken people across the U.S.

“I think health organizations declaring water as safe to drink is a bit reckless,” said Bowcock, the water treatment expert. “They should be saying the water is regulatory compliant, but how can they when a lot of dangerous contaminants aren’t even properly regulated?”

Because there’s no clear way to track everything that’s in the water, it makes it more difficult to connect disease outbreaks and health problems to contaminated water. Even when health officials do keep tabs, the data presented doesn’t paint the whole picture.

The CDC, America’s leading health protection agency, admits its data on contaminated water has many limitations. For example, states report disease outbreaks associated with drinking water to the CDC, but it’s only on a voluntary basis.

“There are differing capacities in each state to detect, investigate and report waterborne disease outbreaks, so we don’t have estimates of the number of people who become ill from waterborne disease as not all states report them,” CDC spokeswoman Brittany Behm said.

A News21 analysis of CDC data indicated that nine states had not reported a waterborne disease outbreak caused by drinking water between 2001 and 2012. However, at least two of the states – Louisiana and Mississippi – have had some type of outbreak, according to information from state health departments.

WATER TREATMENT ISSUES

Sometimes the solutions to treating problematic water also can create health problems.

Chlorine is the most common chemical used to treat contaminated water, but some water treatment experts say it isn’t used because it’s the most effective method, but because it’s the most inexpensive.

“A common misconception is if chlorine is present in the water, bacteria will be controlled, but this isn’t always the case. Chlorine is also problematic,” said water treatment expert Janet E. Stout, president and director of the Pittsburgh-based Special Pathogens Laboratory.

High doses of chlorine can be harmful, but low levels are safe to drink, according to the CDC. Chlorine has been a major disinfectant in the U.S. since 1908, but this low-cost chemical can come at a heavy price.

In St. Bernard Parish, Louisiana, residents say their water tastes like bleach and has caused skin problems.

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Health department officials detected Naegleria fowleri, otherwise known as “brain-eating amoeba,” in the parish’s water system in 2013. A 4-year-old boy died after tap water went up his nose on a Slip ‘n Slide. It was found in the parish’s water system again in 2015. Since then, residents said the chlorine levels have been “unbearable.”

Jennifer Kieff, 38, said she has bumps all over her arms and legs.

“Basically, I look like an alligator,” she said. “I have scalp psoriasis and psoriasis all over my skin. The only thing that clicks in my head on a timeline is the scalp psoriasis and the psoriasis of the skin started around the time they found the brain-eating amoeba in the water, and when the water coming out of the tap was like bleach.”

Officials with the Water and Sewer Division of the St. Bernard Parish Government said the chlorine levels are within CDC guidelines, but they would not confirm how much they add to the water system.

The Louisiana Department of Health has detected brain-eating amoeba in nine water systems across Louisiana since 2015. A spokeswoman said the water is safe to drink, just as long as “it doesn’t go up your nose.” She said the health department “believe the benefits of drinking water disinfection outweigh the potential risks of disinfection byproducts.

Chlorine, once in water, interacts with organic compounds to create harmful byproducts, which can destroy or damage vital cells in the body when ingested. “Chlorine is a known poison to the body,” said Vanessa Lausch of Austin,Texas-based filter manufacturer Aquasana.

Lausch said because so much of the water we drink ends up in the bladder and rectum, it is particularly damaging to those organs if consumed in large amounts.

LACK OF TRANSPARENCY

Residents in Terrebonne Parish, Louisiana, said they usually know something’s wrong with the water when the chlorine smell becomes overpowering. The majority of residents on Island Road found out brain-eating amoeba was in their water system via social media. The health department tested for the amoeba on June 20, and officials said they released a media statement about it a week later.

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“I’m bathing everyone with bottled water, and we’re definitely not drinking it,” said Tara Kopelman, a parent from Metairie, Louisiana. “It doesn’t make sense to me that they say we can drink it. Are they telling us that our ears, eyes, nose and mouth aren’t connected? What if I laugh and it goes up my nose?”

Terrebonne, just an hour away from St. Bernard, is a popular holiday and fishing resort. “Why does nobody take the responsibility to tell us? We’re the last to find out and when we do, it’s because it’s all over the internet,” said Jake Billiot, a local fisherman.

LACK OF ACCOUNTABILITY

Bowcock, who was involved in investigating the Flint, Michigan water crisis, said a lack of accountability by people in charge of water maintenance is “killing people.” Almost 100,000 Flint residents were exposed to high levels of lead in their drinking water due to insufficient water treatment.

The Flint water crisis also caused a deadly Legionnaires’ disease outbreak that killed 12 people. Michigan’s attorney general charged several state officials with involuntary manslaughter in June.

Michael Conway, an attorney who specializes in Legionnaires’ cases, said the Flint manslaughter case may set a precedent that results in more people being held to account. “In my experience, most of these cases settle, as people don’t want it in the public domain that their water systems are contaminated. Flint was an extreme case, but it could change the tide.”

Patricia Rouse still wants somebody to be held accountable for her brother’s death. She said New York City’s health department wouldn’t return her calls after the South Bronx outbreak happened in the summer of 2015.

“When we started probing in a manner that revealed the city’s responsibility, they feared for their jobs and just clammed up,” she said. “The city tells you not to worry as they want members of the public to dismiss it so it takes the heat off them. They say you have to be elderly or have other health problems, but my brother was fit and young, so why did he die?”

In a statement to News21, the health department said that “all cases are investigated, including an interview of the patient’s next of kin to determine the patient’s whereabouts before illness onset.” The statement said Rouse’s case was not considered part of the outbreak because when he acquired legionella, a cooling tower “implicated in the South Bronx Legionnaires’ disease outbreak” was not operational.

However, Patricia Rouse still isn’t satisfied.

“My brother died because of contaminated water, and someone needs to take responsibility for that.”

News21 reporters Fionnuala O’Leary, Briana Smith, Lauren Kaljur, Bliss Zechman and Alexis Reese contributed to this article.

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