Note: This story originally appeared in the Fall 2014 issue of UC Merced Magazine.
Before it infects humans who breathe it in, the fungus that causes valley fever changes shapes in the environment. Once infected, some people fight it off while others die.
If scientists can determine how that shape-shift happens, they might be able to stop it, said Professor Clarissa Nobile, one of a large, interdisciplinary team at the University of California, Merced, working to tackle the valley fever challenge from every imaginable angle.
If researchers can figure out why people react differently to the fungus, it could lead to better treatments, Professor David Ojcius said.
Scientists know the fungus is distributed through dust, but if they can monitor levels in real time, they can build a warning system, Professor Wei-Chun Chin said.
And if researchers can determine where at-risk groups get information, they can create social marketing campaigns that make sure that what people are hearing is accurate, visiting Professor Carol Sipan said.
These four researchers have expertise in microbiology, immunology, bioengineering and public health. They’re part of the UC Merced team working toward better treatments and perhaps a vaccine for what the Centers for Disease Control calls a “silent epidemic.”
“We’re the glue that pulls this whole thing together,” said Professor Paul Brown, director of UC Merced’s Health Sciences Research Institute.
The glue began to gel about a year after the institute was established. That’s when faculty members from all three of UC Merced’s schools came together to attack this potentially debilitating, but poorly understood, illness endemic to the San Joaquin Valley.
“We haven’t really had a research university in the region that could do this, that could pull it all together. We do now,” Brown said.
Many Questions Persist
The scientific name for valley fever is Coccidioidomycosis. People get it by inhaling spores from the fungus Coccidioides immitis or Coccidioides posadasii. These two species are closely related but behave differently. One fungus, immitis, is more common in California, the other in Arizona.
Arizona created the Valley Fever Center for Excellence at the University of Arizona in 1996 to increase awareness, promote better care for patients and encourage research. Until UC Merced launched the California Valley Fever Network in 2013, there was nothing comparable in the Golden State.
Though diseases involving cocci have been reported for more than a century, researchers have a lot to learn.
“The literature goes back to the 1900s, but there are huge holes in it,” said Professor Katrina K. Hoyer. Her research team is trying to find out why some people become gravely ill or have lifelong problems while 60 percent of those infected never show symptoms.
On a national scale, the disease barely registers. Of the 9,438 reported cases in 2013 – the last year for which the Centers for Disease Control has statistics - 305 were scattered across 48 states. The rest were in California and Arizona.
Nationally, the 2013 numbers were down from the peak of 22,641 reported in 2011. No one is sure why cases climbed steadily from 2001 to 2011 then dropped, but there are theories.
Perhaps it was due to heavy population growth in California and Arizona, exposing more people without immunities to the fungus. Perhaps it was a weather pattern of rainy years following by dust-generating droughts.
“There’s some anecdotal evidence, but we just don’t know for sure,” Brown said.
Officials aren’t even sure how many cases there really are. Some who have spent years studying the illness, such as Dr. Michael Mac Lean of the Kings County health department, know that many cases go undetected. That’s in part because most patients recover quickly and testing isn’t necessary, he said.
There also are differences in testing rates among counties in the endemic regions, where awareness of the illness should be higher.
“We know there have to be more cases than are being reported,” Brown said.
Chin believes more physicians would test patients if it were easier – currently, a blood sample is sent off and results come back in a week or two. He’s envisioning an instrument that’s simple enough that any doctor’s office could use it and get quick, accurate results through a direct read-out.
“With early testing, most people will be OK within a week,” he said.
Serious Complications
Another big puzzle: Why the fungus hits some people so hard, while 60 percent of those infected show no signs. Among the rest, 30 percent have moderate symptoms similar to the common flu and 5 percent to 10 percent have serious complications. For less than 1 percent, the illness is fatal.
UC Merced graduate student Karen Deeming is in the “serious complications” group. The Los Banos woman contracted valley fever in 2012 while on an archeological dig in Mariposa County that she needed to complete a field-work requirement for her bachelor’s degree.
Soon after, she started having chest pain, a cough, joint pain and a rash – all potential signs of valley fever. She developed pneumonia – another symptom. She saw three physicians before a nurse practitioner agreed to screen her for valley fever.
“I had to be pushy and forceful,” she said. “I had to pretty much put my foot down and say, ‘I need to be tested.’”
Deeming recovered after taking heavy doses of the antifungal fluconazole for a year. She’ll have to be monitored every three months for the rest of her life, though. If the fungus flares up, treatment will have to resume.
The monitoring and constant follow-up can be hard for patients, particularly the youngest. Erin Gaab is a health psychologist who’s worked extensively in pediatric care. She’s researching valley fever’s impact on children, interviewing patients and their families to learn more about the challenges they face.
Though her research is in its early stages, Gaab is seeing trends, from scheduling and financial strains to the emotional toll on children who face regular hospitalization for follow-up testing.
“There’s a sense of resentment, almost, because they don’t understand why they’re there,” she said.
Access to treatment also is a problem, Gaab said. Pediatric patients in Bakersfield or Avenal have to travel two hours for treatment at Children’s Hospital Central California because the Madera facility is the only one that handles severe cases. When those trips are weekly, it takes a toll.
Gaab and Mac Lean both have seen patients go through the same struggles Deeming endured to even get a diagnosis. Deeming and Mac Lean believe all physicians practicing in the Central Valley should undergo continuing education so they’re familiar enough with the disease that certain combinations of symptoms raise red flags.
Deeming believes public awareness is a key, too, though she said there’s a fine line between educating and scaring.
UC Merced graduate student Phuong “Fiona” Bui muses that a little fear might be a good thing.
“I know some people might freak out, but I think it’s OK to freak out a little bit. If there’s something out there that’s this serious – that can kill you – you need to be a little concerned. We need to arm people with the information they need,” Bui said.
Outreach and education
Bui, a Bakersfield native who’s watched a close family member struggle with valley fever, works with Gaab on pediatric research. She’s also part of Gaab’s team that created UC Merced’s first Valley Fever Awareness Day. The events and exhibits were designed with two goals in mind: To explain what valley fever is and how it’s transmitted, and to show off the efforts at UC Merced in hopes of attracting more scholars to the cause.
Gaab also is active in connecting researchers. She’s helped organize a dozen seminars in the past year that included speakers from across the valley and the University of California system. She’s created the California Valley Fever Network website that acts as a central repository for research and news.
Bui, meanwhile, created the Valley Fever Advocate page on Facebook. She regularly posts links to stories about research and victims, along with announcements about events.
“We, as researchers, feel it’s hard to find information about valley fever. You’ll find the basic, repetitive information, but we want to keep it fresh. In a lot of cases where people are misdiagnosed, it’s because they just don’t know about it,” Bui said.
Work such as Gaab’s and Bui’s tells Valley residents that UC Merced is tackling their problems right now, while also keeping an eye on the long-term.
“People in the region don’t want to hear that it needs more research,” Brown said. “They want to know what we’re doing right now.”
Brown sees Valley Fever Awareness Day as a template for a program that can be taken into the community. Groups in the south San Joaquin Valley already have expressed interest in playing host to presentations, he said.
Sipan is researching how better to communicate in the future. She’s working with Lideres Campesinos as well as with a group in Kern County to find out about farmworkers’ access to care and information with an eye toward developing campaigns that put information where they need it.
Long-term, many more answers are in the labs.
Researchers need to understand more about exposure – they know how the fungus is distributed but don’t know how to warn people to protect themselves.
“Telling people to wear a mask and don’t walk through dust isn’t going to work,” Brown said. “We have a lot of dust clouds around here.”
New generation of researchers
Nobile, meanwhile, wonders if it might someday be possible to alter the fungus in the environment so it doesn’t become pathogenic.
Her work ends when the fungus enters the body, and that’s where other scientists’ research takes over.
Though a vaccine one day might be possible, Professor Aaron Hernday speculates that there will be economic issues between development and production. It will be challenging for a company to find a commercially viable way to develop and produce the relatively small amount of vaccine than is needed compared to, say, flu or polio vaccines.
Short-term, the focus is on developing better treatments. That’s a challenge because fungi are more similar to the human body than bacteria or viruses, which means it’s difficult to develop medications that kill the fungus without harming the body.
“A lot of people think the treatment is worse than the disease,” Hernday said.
It’s possible that a drug cocktail, similar to the method used to treat HIV, might be the solution, he speculated.
In order for that to happen, though, scientists first have to better understand how valley fever affects the body. Hoyer and Ojcius recently began working on just that, through an arrangement that allows them to study blood samples from 30 patients at Children’s Hospital of Madera.
Hernday calls his colleagues and himself the new generation of valley fever researchers, taking over the cause from scientists now in their 70s.
The collaborations at UC Merced and beyond also appeal to him.
“It’s exciting to see,” he said. “One lab can’t move the needle on something like this on its own.”
For some, the valley fever work is about more than science. It’s also about social justice.
“If this were in Los Angeles or New York City, people would be donating a lot of money to find a cure,” Chin said. “If it were in San Jose or San Francisco, it would be all over Facebook.”
Lorena Anderson
Senior Writer and Public Information Representative
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