FRESNO -- Dr. Erin Gaab, a researcher with the UC Merced Health Sciences Research Institute, was unaware of valley fever until about a year ago when doctors from Central California Children's Hospital visited her and spoke of how the disease has affected their young patients.
Rey LeÃ³n, founder and executive director of the San JoaquÃn Valley Latino Environmental Advancement Project, contracted valley fever seven years ago after he was misdiagnosed twice. Later, he discovered that at least five relatives had suffered from coccidioidomycosis, also known as valley fever.
LeÃ³n's and Gaab's unfamiliarity with a disease that has found a home in the Valley's arid conditions underscores the reason researchers, physicians, public health directors, and community members gathered Saturday at UCSF Fresno to figure out how to publicize a disease that affects as many as 150,000 people every year. About 75 people from throughout the Valley and Arizona, another hot spot for valley fever, attended the forum.
The focus of the six-hour Valley Fever Research Day -- hosted by the University of California, Merced, UC San Francisco Fresno Medical Education Program and California State University, Fresno -- was to come up with specifics on how the three institutions could work together to combat valley fever.
"We have some realistic projects that we can work on now," said Gaab. "And we have created networks between universities and between advocacy groups and researchers that will move forward and create great outcomes for us."
Advocates of valley fever research have complained that the disease does not affect enough people to garner attention and funding, local doctors often misdiagnose the disease, most data about the disease dates back decades and the public has little knowledge of the disease and its impact.
Forum participants came up with recommendations that the institutions will focus on, including:
* Creating a tissue data bank to facilitate research on people;
* Finding out what people do after discovering they have valley fever;
* Establishing a network of community clinics that do research on valley fever, and list the physicians who are part of that research;
* Establishing a working relationship with veterinarians who have been quick to detect valley fever in pets;
* Establishing a task force of researchers to meet with the CDC and ask that a large, clinical trial be held in the Valley;
* Establishing a spore count monitor to determine where the infectious spores are coming from;
* Making sure that information on the disease reaches the public; and
* Using the news media more effectively.
"Overall, it's difficult to get national attention for valley fever," said Gaab, who used three student assistants to gather information on valley fever.
LeÃ³n and other valley fever survivors explained how their illness was not diagnosed correctly.
"It took me nearly seven months for me to be properly diagnosed," said William Beatie of Modesto. He was initially told he had stage 2 or stage 3 cancer.
"A simple blood test would have showed it was valley fever," said Beatie, who participated by telephone. "Doctors don't have good enough knowledge. I'd like to see better diagnostic procedures put in place."
A skin test, which was used effectively decades ago, was discontinued when its cost (about $700) skyrocketed.
Valley fever can infect anyone, but it disproportionately affects African Americans, Filipinos, Latinos and Native Americans. Among those most vulnerable are Valley residents over 60 years of age and those who work outside, such as farmworkers, solar plant employees and construction workers.
C. Bryan Little, director of labor affairs for the California Farm Bureau, said farmers and ranchers remain fairly uneducated about valley fever.
"Our recognition is limited but growing," he said.
LeÃ³n said farmworkers need to be educated about valley fever.
"You can teach workers about occupational safety," said Little, "but occupational diseases are a lot harder."
Little said there are 400,000 farmworkers during the peak season.
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.