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The Southwest’s Orphan Disease Thrives on Ignorance

Jan 31 2017

The fungal species that causes the illness known as Valley Fever is known as cocciodiodes. Two strains have been found around the North American Southwest. Researchers have found that the fungal spores have made their home – the scientific term is “endemic” – in areas characterized by low rainfall, temperatures that are high in summer and moderate in winter. In the United States, such regions are found in the southern end of California’s Central Valley, central Arizona and swatches of New Mexico, Nevada, Utah, and Texas. More recently, pockets of coccidioides have been identified in Washington State and Oregon.   Geoff McGhee/Bill Lane Center for the American West

By Felicity Barringer

Valley Fever, a lung disease born of invasive fungal spores that are carried on clouds of swirling dust, is the best-known medical secret of the American Southwest. The parts of California and Arizona where the fungal spores flourish are once-rural places that are now population magnets, where new construction disturbs the earth and can send spores flying.

“Most people in the state of California either have never heard of Valley Fever or believe it is caused by a mosquito,” said the lawyer Peter Alfert. “Even some people living in the endemic area are unaware of what Valley Fever is.”

Tourists and new residents are unlikely to have the acquired immunity of those born in places the fungus calls home. Newcomers may not be warned, or warnings may not be taken very seriously, perhaps because most cases are mild. Yet of an estimated 150,000 infections annually, perhaps three percent become severe cases. A small fraction of these become incurable, leading to meningitis, amputations, or permanent lung damage.

At least 150 people a year die from the disease; the medical system spends hundreds of millions of dollars annually treating Valley Fever patients.

How can Valley Fever be a secret, when so much is known about it? Because there are two Valley Fever universes. In one: rural residents who live near it, doctors who treat and study it, and the victims, including those who have seen the worst it can do. In the other: the rest of the West’s population, and the tourists who visit areas like Phoenix or Tucson that harbor the fungus.

People who most need to know, like tourists and new residents of the Southwest who are unlikely to have immunity, usually haven’t heard about it, despite years of reports by specialized outlets like the University of Southern California’s Center for Health Journalism, regional newspapers, television broadcasts and articles in national magazines like The New Yorker and The Atlantic.

Who Should Know, and Who Should Tell Them?

Screen shot from website of Tejon Ranch developers
Microscopic image of coccidiodomycosis infection.
Yale Rosen via Flickr

The two universes came face to face in a California courtroom a year ago. Five construction workers had contracted the disease while widening a culvert near Route 33 in Kern County, California for the state transportation department. They sued, claiming CalTrans should have told them the risks of working where high levels of the fungal spores are concentrated – the medical term is endemic. The state said the plaintiffs should have known.

“Most people in the state of California either have never heard of Valley Fever or believe it is caused by a mosquito,” said Peter Alfert, the lawyer for the plaintiffs. “Even some people living in the endemic area are unaware of what Valley Fever is.” He added there is “no justification” for state authorities not to warn people at risk. The jury awarded nearly $12 million to the plaintiffs.

Fewer people know about Valley Fever than know about other uncommon diseases like Zika, Avian flu, or Hantavirus. It was national news when mumps cases recently surged to 5,000 across the country. Now there are double that number of Valley Fever cases annually. John Galgiani, a University of Arizona professor who directs a Valley Fever research center in Tucson noted the irony that other, smaller risks get more attention.  "A recall of hundreds of millions of airbags is underway at a cost of billions of dollars,” he said, “even though the actual loss of life has been less than that caused by Valley Fever every year.”

A Steady Increase in Cases, Marked by Outbreaks

Diagnoses of Valley Fever in Arizona and California far outstrip those reported in other western states and the U.S. as a whole. Cases found in the past 20 years peaked in 2011 after steady growth – some of which might be due to rising awareness of the condition, which is sometimes identified as other, more common lung ailments. Researchers believe that rainfall and wind patterns affect the disease’s spread, and that wetter years may bring a greater hazard of Valley Fever.

Chart: Valley Fever cases on the increase, peaking in 2011 outbreak

Sources: Centers for Disease Control and Prevention

Geoff McGhee/Bill Lane Center for the American West, Stanford University

Valley Fever, formally known as coccidioidomycosis, is not communicable but is one of Arizona’s most reported diseases. “Cocci” fungi are endemic in three fast-growing counties around Phoenix and Tucson.

A dust storm blowing through the outskirts of Phoenix in June 2012. (Alan Stark via Flickr)
A dust storm blowing through the outskirts of Phoenix in June 2012. Wind can distribute Cocci spores and lead to increased cases of Valley Fever. Alan Stark via Flickr
 

 

Urban Growth in Central Valley Stirs Fears

Map of Tejon Ranch development
The company Tejon Ranch is building a large residential and commercial development in southern Kern County.

In California, another strain is endemic to the southern San Joaquin Valley, which gave the disease its name. This area around Bakersfield is largely rural. But it, too, is growing; last month, Kern County’s Board of Supervisors approved a proposal for 12,000 homes and 5 million feet of commercial space around Interstate 5.

Julie Solis, the wife of a disabled Valley Fever survivor, made an emotional plea at the December supervisors’ meeting. She urged that people be made aware of coccidioidomycosis before they build or buy the new homes. Still, the county Planning Department’s lengthy draft environmental impact report devotes one page to Valley Fever in one section and four paragraphs in another. The disease has also found its way into California prisons, resulting in severe cases and successful lawsuits.

For decades, centers like the Kern County Medical Center and Dr. Galgiani’s Valley Fever Center for Excellence have investigated coccidioidomycosis. Recently, thanks in part to attention from Kevin McCarthy, the Bakersfield congressman – who is the House majority leader – $5 million in federal funds has been awarded to study Valley Fever.

Dr. Galgiani has developed a vaccine he hopes to see certified by the federal Department of Agriculture for use in dogs. An approved human vaccine would require at least $50 million, maybe $100 million — the cost of trials required to win the Food and Drug Administration’s approval. Developing expensive drugs for conditions without large numbers of victims doesn’t pay. These are known as “orphan” diseases; that is how the FDA has classified Valley Fever.

Seeing the illness only through the lens of mild cases is “cruel and callous,” said David Filip, whose mother had a virulent case. He later wrote “Valley Fever Epidemic” and runs a website called Valley Fever Survivor. “Eventually,” he said, “if there is someone famous who gets really sick” publicity could make Valley Fever harder to ignore.

 

 

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Reader Comments

Submit your own thoughts and questions by using the form at the bottom of this page. Entries will be reviewed and posted as we get them.

Dustin Mulvaney Santa Cruz, CA

Responding to The Southwest’s Orphan Disease Thrives on Ignorance

When I started conducting research on utility-scale solar power plant siting controversies, valley fever was frequently mentioned in public comments or at public meetings. I admit I did not register the issue as one of such importance for public health until I learned that several dozen solar power plant construction workers were diagnosed with valley fever in San Luis Obispo County at two solar farms. The Centers for Disease Control produced a report on it: "Coccidioidomycosis among Workers Constructing Solar Power Farms, California, USA, 2011–2014," Thank you Felicity for the insightful article that puts the issue in perspective. Great maps Geoff!

Editor's note: the writer is a visiting fellow with the Bill Lane Center for the American West

2/2/17,12:01pm

Reader in Benton Harbor Michigan

Responding to The Southwest’s Orphan Disease Thrives on Ignorance

My 18 year old grandson lives in Florida. After months of being sick getting meningitis and having a stroke he was diagnosed with valley fever. This is a horrible disease. He lived in Tucson for 1 year in 2014 and visited in Las Vegas in 2015 . So we aren't sure where he got it. It took finally going to Emory to get a diagnosis.

3/5/2017, 12:10am

Reader in Tacoma, WA

Responding to The Southwest’s Orphan Disease Thrives on Ignorance

My son had Valley Fever years ago. He was one sick young man.

3/21/2017, 3:39pm

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