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Just One Breath: How Voices of Valley Fever Were Heard Coast to Coast

Categories: Disease Investigation, General, Preparedness, Prevention/Vaccination

By William Heisel

One year ago, valley fever was a disease that few people outside of Arizona or Central California had heard of.

Caused by breathing in spores from a fungus that grows in the dirt throughout the Southwest, coccidioidomycosis – as it is formally known – can cause serious illness and a painful death. It spreads from the lungs to the bones, skin, and organs. It can cause lifelong pain and disability and require years of expensive medications. If you live in one of the 15 states that are required to report cases of the disease to the CDC, you have a greater chance of getting valley fever than you do AIDS, hepatitis, or Lyme disease.

I lived south of Los Angeles for 10 years and never heard about it. Nobody I know in Seattle had ever heard of it, either.

“Is that like yellow fever?” is a typical response.

It might have remained a poorly understood and under-the-radar disease if it weren’t for three things: an intense regional media campaign to focus attention on the disease, a new wave of scientific interest led by the CDC, and the intervention of local and federal policymakers.

Now people throughout the United States know about the disease through big stories in the national media. And two of the top health officials in the country – Dr. Thomas Frieden from the CDC and Dr. Francis Collins from the NIH – have pledged to pull together a multi-million-dollar clinical trial to find better treatment protocols.

This all started in the summer of 2012 when ReportingonHealth.org’s editor-in-chief and I (in the role of project editor) convened a group of Southern California media outlets  to talk about the possibilities for collaborating together on untold health stories. The news website is an initiative of The California Endowment Health Journalism Fellowships at the University of Southern California’s Annenberg School for Communication and Journalism, and the reporters who took part in the initial discussions were all former fellows in the professional journalism training program. The project was supported by The California Endowment and, from the onset, we set out to have an impact and make a different through investigative and explanatory journalism. 

From Bakersfield to Fresno to Merced to Stockton, the story we heard from editors and reporters was consistent: people in Central California communities had been hit hard by valley fever, but the news outlets had only scratched the surface reporting on it.  Over the next year, the Bakersfield Californian, the Merced Sun-Star, Radio Bilingüe 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 banded together under the Reporting On Health Collaborative banner.

We called our series Just One Breath because all it takes to catch valley fever is to breath in the fungal spores. The series documented the rise of the disease epidemic, the toll on families and the financial costs, the stalled attempts to find a vaccine, and a range of other issues. Throughout, the collaborative identified the levers that – if switched – could prevent infections and improve the lives of patients afflicted with the disease. And we ultimately provided a five-point road map for changing the course of the disease. We coupled the reporting with an innovative community engagement campaign.

Our stories led to coverage by some of the best-read media outlets in the world, including the Associated Press, the New York Times, and the BBC.

At the same time, the CDC began ramping up its publication of journal articles related to valley fever. Between 2000 and 2011, there were an average of two articles on valley fever in CDC publications: MMWR Weekly and Emerging Infectious Diseases. In 2012 alone, though, the CDC published six articles that provided new information about the disease.

Among these studies was one particularly important report. Coccidioidomycosis-associated Deaths, United States, 1990–2008 detailed the mortality from valley fever, the age groups being hit the hardest and the ethnic differences in death rates. Jennifer Y. Huang, Benjamin Bristow, Shira Shafir, and Frank Sorvillo reported:

During 1990–2008, a total of 3,089 coccidioidomycosis-associated deaths among US residents were identified; these deaths represent 55,264 years of potential life lost. The overall crude mortality rate was 0.58 per 1 million person-years (95% CI 0.56–0.61); after age adjustment, the mortality rate was 0.59 deaths per 1 million person-years (95% CI 0.57–0.61).

That report was followed by an update on the upswing in reported valley fever cases in March 2013, in Morbidity and Mortality Weekly Report (MMWR). The study, Increase in Reported Coccidioidomycosis – United States, 1998-2011, was co-authored by two of the CDC’s lead experts in fungal diseases: Dr. Tom Chiller and Dr. Benjamin Park, along with Clarisse A. Tsang, Farzaneh Tabnak, Dr. Duc J. Vugia, and Kaitlin Benedict. They wrote:

This report describes the results of that analysis, which indicated that the incidence of reported coccidioidomycosis increased substantially during this period, from 5.3 per 100,000 population in the endemic area (Arizona, California, Nevada, New Mexico, and Utah) in 1998 to 42.6 per 100,000 in 2011. Health-care providers should be aware of this increasingly common infection when treating persons with influenza-like illness or pneumonia who live in or have traveled to endemic areas.

Soon, it wasn’t just the media and the scientists who were calling attention to valley fever this past year. Politicians started to move, too.

Within a few weeks of the Just One Breath kickoff in September 2012, Michael Rubio, then a California state senator, called a town hall meeting in Bakersfield that brought together community leaders, clinicians, researchers, and patients to talk about how to deal with the disease. He then formed a valley fever committee in the state Senate.

“Let’s have a competition: Who can come up with a better test so we can achieve it?” Rubio said to the crowd. “Who can come up with a better treatment so we can have a cost-effective way of treating this very serious disease?”

At the federal level, Sen. Kevin McCarthy, R-Bakersfield, contacted Dr. Frieden at the CDC. McCarthy told reporters earlier this year that he knew there had to be a better way to deal with valley fever.

“What I would like to do in the short-term is a randomized clinical trial, because no facts are proven out there for the best treatment for valley fever,” he said. “It’s still unknown.”

That was in April. Last month, McCarthy helped make something unprecedented happen when he brought Drs. Frieden and Collins to Bakersfield for a two-day symposium on the disease.

The unknowns about valley fever are starting to give way to concrete, concerted action. As developments unfold, you can be assured that many more people are going to be paying attention. Gone are the days when valley fever was thought of as an unavoidable risk, the downside of all the upsides of living in the Southwest. People have seen what is possible when the science, policy, and advocacy communities put their heads together, and they want to see that same attention paid to valley fever.

William Heisel is a Contributing Editor at ReportingonHealth.org and the Project Editor on the Just One Breath series about valley fever. A reporter for 20 years, Heisel lives in Seattle, where he works as the Director of Communications for the Institute for Health Metrics and Evaluation.

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