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3:02 am
Mon May 13, 2013

Cases Of Mysterious Valley Fever Rise In American Southwest

Originally published on Tue September 24, 2013 10:11 am

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 Delano, in California's Central Valley, 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 a fact of life in parts 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."

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, Calif., was running a bulldozer 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.

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.

This story was produced by KVPR as part of a series produced by the USC Annenberg Reporting on Health Collaborative.

Transcript

DAVID GREENE, HOST:

It's MORNING EDITION from NPR News. Good morning, I'm David Greene.

STEVE INSKEEP, HOST:

And I'm Steve Inskeep.

Today in Your Health, public health officials are growing increasingly concerned about a potentially fatal disease that's hit California and Arizona. It's called valley fever.

GREENE: And while it's reaching epidemic proportions in the southwestern part of the United States, the disease is virtually unheard of in the rest of the country.

Rebecca Plevin, from member station KVPR in Fresno, California, reports that the biggest concern is that valley fever is often misdiagnosed.

(SOUNDBITE OF RUNNING FOOTSTEPS)

EMILY GOROSPE: Woo-hoo.

REBECCA PLEVIN, BYLINE: Emily Gorospe cannot sit still.

EMILY: I need to let my energy out.

(SOUNDBITE OF GROWL)

PLEVIN: The spunky eight-year-old with long brown braids loves to make up dances in her bedroom.

EMILY: This move is my favorite.

(SOUNDBITE OF CLAP)

EMILY: We're doing in hip-hop.

(SOUNDBITE OF CLAP)

EMILY: (Singing) (unintelligible)

PLEVIN: But when she was just six, Emily became very tired and sick. She developed a fever that wouldn't go away, and red blotches appeared across her body.

VALERIE GOROSPE: She's got so much energy usually and she - just walking from one part of the house, like from her room to the living room or to the kitchen - she was drained.

PLEVIN: Emily's mother, Valerie, knew something was wrong with her daughter when she became pale and was always exhausted.

GOROSPE: She just didn't look like our Emily, not just her actions but just - she just didn't look like herself.

PLEVIN: Emily lives in Delano in California's Central Valley. She was eventually diagnosed with valley fever. She's one of an estimated 150,000 people nationwide stricken with the fungal disease every year. There is no cure and no vaccine. Valley fever is a fact of life in parts of California and Arizona. Tiny spores live in the soil throughout much of this arid region. When the spores are disturbed, they can be inhaled into the lungs.

Dr. James McCarty is the medical director of infectious diseases at Children's Hospital Central California. He says most people feel nothing or experience symptoms similar to the flu.

DR. JAMES MCCARTY: Fever, night sweats, weight loss; often patients will present with chest pain, with cough, sometimes with skin rashes.

PLEVIN: Valley fever can be a very serious disease for some people, he 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.

MCCARTY: About five out of 100 patients will develop pneumonia. We see mild pneumonia. We see moderate pneumonia. We see severe pneumonias. And then, about one out of 100 patients, valley fever will spread outside of the lungs and go to other parts of the body.

PLEVIN: In recent years, valley fever numbers have soared so high that health officials are calling it an epidemic. The disease has become a huge problem in California's prisons. The state's being ordered to move inmates at high risk of contracting the disease 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.

Dr. Benjamin Park is a medical officer at the CDC.

DR. BENJAMIN PARK: What's really interesting, the number of cases and, in fact, the incidence of these cases increased steadily throughout this time period, and really accelerated over the last few years.

PLEVIN: 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.

PARK: Physicians and patients, persons need to be aware of this disease, especially if you live in one of these areas, or even if you've traveled to one of these areas.

PLEVIN: 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 it hits African-Americans and Filipinos harder than the rest of the population. Researchers do know this: people who work outside, like construction and farm workers, are at higher risk.

TODD SCHAEFER: Welcome to Paso Robles, here's valley fever.

PLEVIN: Todd Schaefer is a winemaker in Paso Robles, California. About 10 years ago, he was running a bulldozer through a vineyard. A few days later, he became very sick.

SCHAEFER: It knocked me on my tail. And I couldn't even work. I couldn't get out of bed.

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

SCHAEFER: I think if they would have caught it early, they would have not allowed it to disseminate through my whole body. And eventually rest and set up shop in my brain and spinal cord. That's the killer.

PLEVIN: The disease saps his energy and prevents him from working more than four or five hours a day.

SCHAEFER: I feel handicapped, completely handicapped. I usually come in and get like maybe four or five hours of work in. And then I am wiped out. I have to go home and take a nap - it's simple as that. And it's getting less and less possible for me to work, without a doubt.

PLEVIN: Schaefer's 48 and he'll take antifungal medication for the rest of his life. The drugs are keeping him alive but not necessarily healthy.

SCHAEFER: Well, I've been taking 600 to 800 milligrams a day. And it's - it's a poison. I mean it's as simple as that. It's an antifungal poison. It doesn't kill it. It just keeps it down to a low roar - which I don't know how it does that, but thank God it does.

PLEVIN: The antifungal medication has horrible side effects. One of the worst ones for a winemaker is he can't drink his own wine while on the drugs.

SCHAEFER: I'm a big, strong guy and it knocked me silly, knocked me flat out. I had no idea what was going on. Valley fever, what is this disease? It's horrible.

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

MCCARTY: Early detection of valley fever is important because we do see patients in whom there's been a delay in diagnosis, and we believe that this leads to more complicated and more difficult-to-treat disease. So in particular, the patients that are - go on to have the severe valley fever, the earlier we can catch them the better, because it makes their treatment that much easier.

PLEVIN: 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.

Part of the problem is a lack of research and attention from policymakers, says Dr. George Rutherford, University of California, San Francisco.

DR. GEORGE RUTHERFORD: Diseases that are of interest, that receive a lot of national interest, tend to be diseases that occur in the East, and where they read about them in the Washington Post every day or CDC sees about them in the Atlanta Journal-Constitution every day or they make the New York Times. Diseases that don't exist in that belt really kind of fall off the radar screen, and unfortunately valley fever is one of those diseases.

PLEVIN: And 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's directed toward West Nile virus. But valley fever has stricken about four times more people than West Nile, with thousands more going undiagnosed. It's killed many more people, too.

SCHAEFER: They don't know why I'm alive. My doctors at Stanford look at me and I've got all the top neurologists and infectious disease doctors and they say, Todd, we don't understand why and how you are still alive. We don't get it. But whatever you're doing, keep it up and let us know what you're doing, how you're doing it.

PLEVIN: Since he contracted valley fever 10 years ago, Todd Schaefer has continued making award-winning pinot noirs. But even as his boutique winery prospers, his health is deteriorating. He's losing his memory and the doctor expects Schaffer will suffer strokes and seizures in the future.

SCHAEFER: This is disease is absolutely 100 percent real. It's not a fairytale. It's an absolute nightmare.

PLEVIN: And as a search for better treatments and eventually a vaccine continues, people throughout the Southwest will suffer from valley fever.

For NPR News, I'm Rebecca Plevin in Fresno.

(SOUNDBITE OF MUSIC)

GREENE: Rebecca's report is part of a collaboration between Valley Public Radio and the USC Annenberg Reporting on Health Collaborative.

(SOUNDBITE OF MUSIC)

GREENE: You're listening to MORNING EDITION from NPR News. Transcript provided by NPR, Copyright NPR.

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