(Daniel Casarez/Vida en el Valle/Reporting on Health Collaborative)

When she was just 6, Emily Gorospe became very tired and sick. The spunky girl, now 8, developed a fever that wouldn’t go away, and red blotches appeared across her body.

“She’s got so much energy usually,” says Emily’s mother, Valerie Gorospe. “Just walking from one part of the house … she was drained.” The little girl was also very pale. “She just didn’t look like herself,” Valerie recalls.

Emily, who lives in the Central Valley town of Delano, was eventually diagnosed with valley fever, also known as coccidioidomycosis. She’s one of an estimated 150,000 people nationwide who get the fungal disease every year. There is no cure and no vaccine.

Valley fever is well known in the Central Valley and other areas of California and Arizona. Tiny fungal spores live in the soil throughout much of this arid region. When the spores are disturbed, they can be inhaled into the lungs.

James McCarty, the medical director of infectious diseases at Children’s Hospital Central California, says most people feel nothing, or experience symptoms similar to the flu. Common symptoms include fever, night sweats, weight loss, chest pain, cough and sometimes skin rashes.

Valley fever can be a very serious disease for some people, McCarty says. It can spread from the lungs to other parts of the body, like the central nervous system, bones or skin. It can be life-altering or even fatal.

“About five out of 100 patients will develop pneumonia,” McCarty said. “Then in about one out of 100 patients, valley fever will spread outside of the lungs and go to other parts of the body.”

Valley fever cases up nearly 900 percent

In recent years, valley fever numbers have soared so high that some health officials are calling it an epidemic. The disease has become a huge problem in California’s prisons. The state is being ordered to move inmates at high-risk of contracting the illness from two prisons where the fungus is rampant.

The Centers for Disease Control and Prevention says the total number of valley fever cases nationwide rose by nearly 900 percent from 1998 to 2011. Researchers don’t have a good explanation for the dramatic increase. Even when accounting for growing populations throughout the Southwest, the numbers are still staggering.

“What’s really interesting … is that the number of cases — the incidence of these cases — increased steadily throughout this time period, and really accelerated over the last few years,” says Benjamin Park, a medical officer at the CDC.

Relatively little is known about valley fever. No one knows how much exposure to the fungus it takes to contract the illness, or why some people die and others never know they have spores in their lungs. It’s also unclear why the illness seems to strike African-Americans and Filipinos harder than the rest of the population.

Researchers do know this: People who work outside — like workers in construction and on farms — are at higher risk.

Todd Schaefer, a winemaker in Paso Robles, was running a bulldozer in his vineyard about 10 years ago. A few days later, he became very sick.

Doctors said he had an ordinary form of pneumonia, and recommended that he go home and eat chicken soup. It took them a month to realize he had valley fever, and to start him on anti-fungal medication. By that time, the fungal infection had spread to his central nervous system.

“I think if they had caught it early, it would not have been allowed to disseminate through my body and set up shop in my brain and spinal cord,” Schaefer says. “That’s the killer right there.”

Schaefer is 48; he’ll take anti-fungal medication for the rest of his life. The medication has horrible side effects. One of the worst ones, for a winemaker, is that Schaefer can’t drink his own wine while on the drugs.

The drugs are keeping him alive, he says, but not necessarily healthy. The disease saps his energy and prevents him from working more than four or five hours a day.

“It’s an anti-fungal poison,” he says. “It doesn’t kill it. It just keeps it down to a low roar.”

McCarty says if the disease is caught early, physicians have a better chance of keeping it at bay.

“We do see patients in whom there’s been a delay in diagnosis, and we believe this leads to more complicated and difficult-to-treat disease,” McCarty says.

Researchers say most cases are misdiagnosed or missed entirely. That’s in part because of a lack of training and attention in the medical community, and because the symptoms are so varied.

East-coast bias among researchers, policymakers an issue

Part of the problem is a lack of research and attention from policymakers.

“Diseases that receive a lot of national attention tend to be diseases that occur in the East, and where they read about it in the [newspapers],” says Dr. George Rutherford of the University of California, San Francisco.

But “diseases that don’t exist in that belt really fall off the radar screen,” he says, “and, unfortunately, valley fever is one of those diseases.”

Diseases that don’t have a high profile also struggle for funding. Consider this: In the past 12 years, the National Institutes of Health has granted valley fever just 4 percent of the research funding it has directed toward West Nile virus. But valley fever has afflicted about four times more people than West Nile, with thousands more going undiagnosed. Valley fever has killed many more people, too.

Since he contracted valley fever 10 years ago, Schaefer, the Paso Robles winemaker, has continued making award-winning pinot noirs. But even as his boutique winery prospers, his health is faltering. He’s losing his memory, and the doctor expects he will suffer strokes and seizures in the future.

“This disease is … not a fairytale,” he says. “It’s an absolute nightmare.”

As the search for better treatments and, eventually, a vaccine continues, people throughout the Southwest United States will suffer from valley fever.

It’s all that land around the prison (Avenal State Prison seen here) that carries a health hazard, the same one that affects solar manufacturers. (Buzzbo/Flickr)

Normally, you wouldn’t put “prisons” and “solar” together when thinking about a significant health problem hitting California. But the two prisons in question are in the dry, dusty Central Valley. The solar manufacturing is on huge construction sites in the California desert. Anyone who lives in those areas of California might quickly add these two clues together and come up with an answer:

Valley Fever.

Valley Fever can cause something like a nasty flu, but some people, especially those with compromised immune systems, can die. It is not contagious. Instead the illness spreads when people inhale fungal spores carried in the dirt by the wind.

California’s prison system has been fighting a losing battle with Valley Fever since 2006. In particular, inmates in two prisons along the I-5 corridor are right in harms way.

Now the federal receiver in charge of health care in California’s prisons has ordered state officials to move 3,300 inmates out, as Julie Small detailed on The California Report Wednesday morning. Inmates at higher risk include those over age 55, people undergoing chemotherapy or anyone with an illness that compromises the immune system, such as HIV/AIDS.

This move would be a “logistical nightmare” for prison officials, Small reported. The 3,300 inmates are roughly 40 percent of the two prisons’ population. Still the directive is effective immediately and has the additional headache of coming just days before state corrections officials are to submit a plan to federal court on reducing the state prison population by 9,000 inmates by the end of the year.

Meanwhile, 28 workers at two large solar power plant construction sites in eastern San Luis Obispo County have also come down with Valley Fever. As the Los Angeles Times reports, officials from the California Department of Public Health visited the sites two months ago.

This type of construction involves scraping and clearing ground to make room for thousands of acres of solar panels. Dust goes flying. From the Times:

Although respirators can prevent valley fever, workers laboring in harsh desert heat find the large commercial masks uncomfortable and are reluctant to wear them, Simonin said. He said the developer has done good job keeping dust down on the site.

The threat of acquiring the respiratory illness extends to residents living near expansive construction sites. That risk is rising given the scope of the renewable energy boom centered in the state. Scores of solar projects are planned for millions of acres across California’s Mojave Desert and elsewhere.

People who work outside — in construction and agriculture — are at highest risk of contracting Valley Fever. And incidence is way up. Over the last dozen years, cases are up nearly 800 percent, according to the CDC. 

Learn more:

Prison Health Advocates Call for More Steps to Stop Valley Fever Outbreak (KVPR)

Valley Fever is a disease caused by a fungus found in the soil in certain parts of the southwestern U.S., including California. (Getty Images)

The Centers for Disease Control and Prevention confirms in a new research article this week what doctors, epidemiologists and people who suffer from valley fever have experienced first-hand — cases of the fungal disease rose at stunning rates over the last decade, especially in California and Arizona.

The CDC’s analysis addresses the findings reported in Just One Breath, a series of news stories on valley fever by the Reporting on Health Collaborative published in The [Bakersfield] Californian and other outlets. The series chronicled the rise in valley fever cases and deaths and the lack of attention by state and federal policymakers.

“I do think that the reporting series helped to put (valley fever) at the forefront, especially in California,” said Dr. Benjamin Park, medical officer in the CDC’s Mycotic Diseases Branch and the study’s senior author.

But valley fever seems to be gaining policy attention. House Majority Whip Kevin McCarthy, R-Bakersfield, and CDC Director Dr. Tom Frieden recently met to talk about valley fever’s impact in the Southwest.

“We discussed the possibility of developing a vaccine and also developing various strategies to combat this disease through better diagnosis, treatment and prevention, and I commend Dr. Frieden’s willingness to accept the invitation I made for CDC officials to come to Bakersfield to improve awareness and meet with our local valley fever experts and our medical community,” McCarthy wrote in an email.

In an email, Frieden wrote that his agency is “committed to continuing to work together to address this serious and costly disease.”

Frieden also wrote that he is looking forward to welcoming McCarthy on a visit to the CDC in April to meet with the agency’s valley fever experts and tour facilities.

To better understand valley fever’s toll, the CDC analyzed data from the National Notifiable Diseases Surveillance System for the years from 1998 to 2011.

“What was surprising to me was that these increases (in valley fever) have been very consistent year over year,” Park said. “Overall, the trend, I think, is quite striking and it clearly shows that there is an increasing burden.”

The findings, published Thursday on the CDC’s Morbidity and Mortality Weekly Report, mirror much of what the Reporting on Health Collaborative found, including:

• The total number of valley fever cases rose by more than 850 percent between 1998 and 2011 in the area where valley fever is most common — California, Arizona, Nevada, New Mexico and Utah — to 22,401. In California, the case counts rose from 719 to 5,697 over the 13-year period.

Cases in Arizona increased from 1,474 to 16,467 during the same time. The study noted that a change in a major Arizona lab’s reporting practices could account for part of Arizona’s increase.

In states where the disease is not as common, the number of valley fever cases reported jumped from six in 1998 to 240 in 2011.

• For the entire period, a total of 111,717 coccidioidomycosis cases were reported to the CDC from 28 states and the District of Columbia. The CDC found that 66 percent were reported from Arizona and 31 percent were from California.
• Because cases can go up simply as a matter of the population increasing, the CDC also tracks the rate of the disease in the population — known as the incidence. The incidence of reported valley fever grew eight-fold from 1998 to 2011, rising from 5.3 per 100,000 people in the areas where valley fever is common to 42.6 per 100,000, the article said.
• The rise of valley fever occurred across all age groups. The rate of the disease was highest among 40- to 59-year-olds in California, but in other states the incidence was higher among people 60 and older.

The study includes several caveats about its findings, noting that artificial increases in cases could be spurred by changes in how states monitor the disease and increases in the number of people being tested for valley fever. But the CDC research paper also points out that a 2006 study found only 2 to 13 percent of patients with signs and symptoms were tested for valley fever, indicating that the disease is likely greatly underreported.

“The problem is we don’t really know what the underreporting rate is, but it’s substantial,” said Dr. Royce H. Johnson, professor of medicine at UCLA and chief of infectious disease at Kern Medical Center.

Michael Lancaster, director of laboratory services at the Kern County Public Health Services Department, said the various factors mentioned in the article could add up to a bit of an increase but that “we’re probably in reality seeing more valley fever.”

The study also notes a lack of data about race and ethnicity. Higher valley fever rates have been shown among blacks and Asians, and blacks are at greater risk for developing the most serious form of the disease, the study says. But the study says that about 70 percent of cases were missing details about race and ethnicity.

Valley fever experts said the numbers prove that the disease is a public health concern worthy of research dollars.

Better diagnostics, medications and a vaccine to fight the disease cannot be achieved without more money, they said.

Industry and government funding for valley fever research has dried up, Johnson said.

“There are many, many diseases getting more funding that are less important than this one,” Johnson said, noting the personal and financial cost of failing to address the growing problem of valley fever.

CDC’s Park said the study’s findings provide a strong argument for development of better treatments for valley fever so people suffering from the disease can resume their normal lives sooner and stay out of the hospital.

“Clearly more research is warranted and is needed,” he said.

Misdiagnosis is common when it comes to valley fever.

Doctors and public health officials stressed that educating physicians and the public generally to identify valley fever symptoms remains crucial because the disease is difficult to prevent.

“Because fungus particles spread through the air, it’s nearly impossible to completely avoid exposure to this fungus in these hardest-hit states,” Frieden wrote. “It’s important that people be aware of valley fever if they live in or have traveled to the southwest United States.”

Clarisse Tsang, acting infectious disease epidemiology program manager for the Arizona Department of Health Services and an author of the CDC study, said people should learn valley fever symptoms and ask their doctors to test them for the disease if they are suffering from a cough, fever and fatigue.

Physician awareness matters beyond Arizona and California, experts said, so that doctors examine patients’ travel histories and recognize that valley fever is a possibility if patients have journeyed through endemic areas.

Valley fever will continue to be a public health issue as more people who have not been exposed to the disease travel to areas where the fungus is common, Lancaster said.

“It’s going to become an even worse problem,” he said.

The Reporting on Health Collaborative involves The Californian, the Merced Sun-Star, Radio Bilingue in Fresno, The Record in Stockton, Valley Public Radio in Fresno and Bakersfield, Vida en el Valle in Fresno, the Voice of OC in Santa Ana and ReportingonHealth.org. It’s an initiative of The California Endowment Health Journalism Fellowships at the University of Southern California’s Annenberg School for Communication and Journalism.

By Kellie Schmitt, Rebecca Plevin and Tracy Wood

A man struggles through heavy winds and dust blowing in downtown Fresno. (Craig Kohlruss: FresnoBee)

Valley fever starts with the simple act of breathing.

The fungal spores, lifted from the dry dirt by the wind, pass through your nostrils or down your throat, so tiny they don’t even trigger a cough. They lodge in your lungs. If you’re fortunate – and most people are – they go no further.

But if you are one of the more than 150,000 people stricken with coccidioidomycosis every year nationwide, it’s because the spores have sent roots into the moist tissue of your lungs.

They start to feed, and, over time, they can rob you of your health. In serious cases, your muscles waste away. Your bones become brittle. Pustules appear on your arms, neck and face and then erupt.

Once the fungus takes root, it never leaves you. In about 100 cases every year nationally the fever kills. That’s more deaths than those caused by hantavirus, whooping cough, and salmonella poisoning combined, yet all of these conditions receive far more attention from public health officials and are more widely known.

As horrible as the disease can be, people in Bakersfield, Fresno, Merced, Stockton and other parts of California’s San Joaquín Valley have come to accept it as a way of life. Everyone knows somebody who has had valley fever, and most have survived.

But talk to the people who deal with the disease every day – epidemiologists, clinicians, and the patients themselves – and you’ll hear a sense of urgency. Valley fever numbers are soaring so high that health experts call it an epidemic.

“Only few diseases have increased like this in my career,” Gregg Pullen, the infection control manager for Children’s Hospital Central California in Madera, said at a recent public health gathering in Hanford. “I can’t remember ever seeing cocci like we have in the past two years.”

The cocci fungus is common in much of the southwest and in northwestern Mexico, especially in the dry earth of California’s Central Valley and in the areas around Phoenix and Tucson in Arizona. It can be found, however, in soils of the beach haven of San Diego, the wine country of Sonoma County and inland in the Sierra foothills.

But you don’t have to live in one of those areas to catch the disease. Millions of people drive through the heart of valley fever country every year on Interstate 5 and can inhale the fungus with just one unlucky breath.

Read other stories in the series by clicking on the image above.

Efforts to stem the tide and to prevent new infections are hampered by widespread misdiagnosis, a lack of research funding, and decades of neglect by state and federal policymakers.  Misdiagnosis is so pervasive, experts say, that some suffer and even die from valley fever without knowing they had the disease.

Just this summer, the small pool of funding for a potential vaccine dried up, leaving little hope of conquering the disease. Higher profile illnesses like West Nile virus command 20 times as much in federal funding. Yet valley fever harms far more people and is far more costly, according to National Institutes of Health data and a series of academic studies.

“Valley fever is not occurring in D.C., it’s not occurring in Atlanta, and it’s not occurring in Bethesda, Maryland. It’s invisible to the most important policymakers when it comes to health funding,” said valley fever researcher Dr. George Rutherford at the University of California San Francisco. “And that won’t change unless the need for a vaccine is elevated in some way.”

A hidden menace

By many measures, valley fever should be a disease that prompts an aggressive public health response. For nearly two decades, statistics from the U.S. Centers for Disease Control and Prevention show coccidioidomycosis doing more and more harm every year, with the rate of infection rising faster than most diseases reported to the CDC.

Some of that rise is due to an uptick in diagnosis and better disease reporting to state and federal agencies. But the trend can’t be explained by better reporting alone.

In 2000, cocci wasn’t even among the nation’s top diseases, as ranked by the rate of infection.  There were fewer than four cases for every 100,000 people. By 2009, though, the rate of cocci had more than quadrupled to 13.24 for every 100,000 people, meaning that people in states that report the disease to the CDC had a higher likelihood of catching cocci than AIDS, hepatitis, or chickenpox.

While cases of tuberculosis and AIDS fell by half between 1995 and 2009, cocci rose 12-fold, according to CDC data. And the numbers continue to climb. In 2011, more than 13,200 people were diagnosed. But most cases are not diagnosed, and researchers estimate that the fungus infects more than 150,000 people every year who either suffer serious ailments without knowing the cause or who have mild cases that escape detection.

Most of the cases are concentrated in two states: Arizona and California. Arizona’s rate of valley fever jumped from 31 cases for every 100,000 people in 1999 to 157 cases in 2011. California officials did not provide similar data.

California cases jump annually

Alarmed by the rise in cases along the state’s main north-south corridor, Interstate 5, California county health officials called a meeting this past June in Hanford. Every participating county – except Tulare — reported an increase in valley fever cases.

“If you’re driving up and down I-5, hold your breath,” Kern County epidemiologist Kirt Emery said, half-jokingly.

Kern County is a good case study for the rest of the state. The county’s history of strong health department reporting shows a relatively constant trend in cases over the past three decades with two exceptions: a dramatic spike in the mid-1990s, which observers have dubbed the “Great Epidemic,” and another significant climb now, which some call “The Second Epidemic.”

An epidemic occurs when growth in cases far exceeds what has become the baseline rate over time.

Kern’s numbers more than tripled from 2009 to 2010, for a total of 2,051 that year. In 2011, they jumped to 2,734. So far, this year is following a similar trend.

Emery, the Kern County epidemiologist, was concerned that the uptick could be the result of more labs being required to report the disease because of a 2010 change in state law. So he removed the data from those labs from his analysis. Even with that new data excluded, there was still enough of a leap to call the rise an epidemic, Emery said.

“We’ve been reporting the exact same way since the 1980s, so it doesn’t across the board explain the increase we’re seeing,” Emery said. “In most counties, they’re pretty much doing the same thing they’ve always done.”

A little understood disease

Even though the first known case of valley fever was discovered more than a century ago, scientists continue to puzzle over exactly how the disease spreads and how to prevent it.

No one knows how much cocci needs to be breathed in to contract the disease. Computerized air screening systems can detect a wide range of spores for diseases such as anthrax, one of the most worrisome bioterrorism threats. But no one knows how to screen the air adequately for cocci during windy days. No one knows why some people die and others never know they are walking around with spores in their lungs.

People who work outside – farm workers and construction workers – are most likely to get it. The disease hits blacks and Filipinos harder than the rest of the population, and people with compromised immune systems and older people are more likely to suffer complications.

For Bakersfield physician Dr. Yakdan Al Qaisi, the fight with the fungus began with a fever that drenched his pillow at night. No medications would reduce it. He lost his appetite. By the time his health improved, he had spent time in the hospital with pneumonia, lost 30 pounds and missed work for nearly six weeks.

“If I had known I would get this, I wouldn’t have come here and exposed my family to this,” Al Qaisi said. “It was a very scary time.”

In a small percent of cases, the fungus spreads beyond the lungs. This is called disseminated valley fever, and the effects can be devastating. Doctors compare the illness to tuberculosis because of its ability to damage so many distinct areas of the body. The fungus can enter the bones, skin and other organs, leading to brain swelling, lung failure, and, eventually, death.

“Disseminated cocci can be terrible,” said Dr. Navin Amin, the chair of the family practice department at Kern Medical Center. “We need to catch it earlier and start treating it aggressively.”

Treatments usually include several rounds of antifungal medications and, at times, surgeries to remove infected bone or skin. If it is caught early, physicians have a better chance of keeping the disease at bay. Without treatment, a person who develops a brain infection from the disease is much more likely to die. But physicians don’t often catch it early. Researchers say that most cases are misdiagnosed or missed entirely, in part because of a lack of training and attention in the medical community, in part because the symptoms are so varied.

When the disease causes unsightly abscesses on the skin, doctors think first of bacterial infections like staphylococcus. When the fungus invades the joints and leads to swelling and excruciating pain, doctors think of arthritis or cancer.

In January 2011, 12-year-old Tyler Bridgewater of Oildale died after doctors in Bakersfield treated him for viral meningitis instead of valley fever, his mother said.

Even if the disease is treated, some patients with cocci could be on anti-fungal treatments for the rest of their lives, often with troublesome side effects.  Most patients with healthy immune systems who beat the disease are able to wall away the valley fever fungus and never be sickened by it again. In some cases, though, it resurfaces when the immune system is weakened by another disease, or when a patient takes medications that lower the body’s defenses.

Valley fever a low priority

Cocci has never had the high profile of diseases that affect far fewer people. The CDC didn’t even track valley fever until 1995. In 2007, it stopped gathering data about deaths from the disease.

In 2009, there were 720 cases of West Nile virus and 12,926 cases of cocci nationwide, meaning fewer people were stricken by West Nile virus over the entire year than by cocci every month. Yet, the agency has a whole campaign dedicated to West Nile and it publishes information about it in 11 languages. It provides an online map that shows data as current as three days earlier.

Federal agencies also have paid little attention to valley fever on the research side. The National Institutes of Health has neglected research funding on valley fever for decades.

Since 2000, 1,287 projects received a total of $585 million from the National Institutes of Health for work involving West Nile. Valley fever projects have received about 4 percent of that amount – $25 million over the past 12 years. The impact on human health is nearly the reverse. Valley fever has stricken about four times more people than West Nile virus, with thousands more going undiagnosed. It has killed many more people, too.

States have had very different responses to the disease.

In 1997, Arizona required all physicians and testing laboratories to report any cases of valley fever to the state so it could accurately track it. After repeated studies showed that most valley fever cases were not being diagnosed, Arizona policymakers changed the guidelines to encourage better diagnosis and tracking of the disease in 2008.

California did not make the change in reporting requirements until 2010, and the state has yet to change the diagnosis guidelines or develop a surveillance system that allows it to follow trends in the disease easily. Dr. Gil Chavez, the state’s chief epidemiologist, explained that the state only has access to data on valley fever as far back as 1990. And those are just paper records. From 2000 forward, the state started making annual compilations of electronic data, but none of the databases are linked.

“I don’t have a single dataset that I can query and give me everything for the last 20 years,” Chavez said. “I would have to go through every year, and every one of those queries requires a lot of staff time. It’s just something that we don’t do very often.”

Reporters tried to interview state researchers who apparently are working on a valley fever project funded by the CDC but were sent a form email from the California Department of Public Health that said: “CDPH does not discuss studies that are ongoing.”

Perhaps it’s not surprising that the state health department has not issued any warnings or press releases about valley fever in the previous five years. No major political figure in California has sounded the alarm about the rise in cases, either.

In August, the mayor of Dallas, Mike Rawlings, declared a state of emergency in Texas because of West Nile virus. There have been 43 deaths in the state, the most on record. “I cannot have any more deaths on my conscience because we did not take action,” he said.

Unlike West Nile, though, no one is keeping a careful count of valley fever cases.

“For the areas affected, the impact of this disease is every bit as important as polio before the vaccine or chicken pox before the vaccine,” said John Galgiani, the director of the Valley Fever Center for Excellence in Arizona. “The numbers are going up and no one’s talking about it. Those communities hurting the most should be pushing the hardest for action to be taken.”

Yesenia Amaro and Joe Goldeen contributed to this report.