Just One Breath: Valley Fever Harms More People Every Day than the Diseases that Make Headlines
Ask someone about an infectious disease that scares them.
They will mention AIDS or, perhaps, hepatitis. West Nile virus, hantavirus, and bird flu are all top of mind, kept there by constant news stories and government press releases. If the person is older, she may talk about a relative who had polio and how the thought of being paralyzed kept her up at night.
Chances are good they will not mention coccidioidomycosis, also known as valley fever. This disease is caused by a fungus that sends out spores into the air. All you have to do is breathe them and you can have the disease for the rest of your life. It can spread into your bones and into your brain. Doctors compare it to cancer because of the way it feeds on tissue and keeps coming back.
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.
You know how you keep hearing about whooping cough rates going up because some parents have chosen not to vaccinate their kids – putting everyone at greater risk? There’s good reason to write about that dangerous trend, but consider that 5.54 people out of every 100,000 were diagnosed with whooping cough in 2009. The rate for Valley Fever was more than twice that: 13.24. (Remember that the CDC calculates the rates based on the populations in the states that report the disease.)
And West Nile virus?
When I last checked, there were more than 1,000 news stories showing up in Google News that mentioned West Nile virus. Most cases reported in history. Six deaths in Michigan. Thankfully, though, the chickens in Brevard County don’t have it.
West Nile absolutely deserves some media and policy attention. But look at the numbers. The incidence of West Nile virus through 2009 has been less than 1 case per 100,000 people. In this most recent outbreak, in the vast majority of states, that’s still the case. In a handful of states – including Texas – the incidence has risen above 1 per 100,000. There have been 87 deaths nationwide this year, which is quite high for West Nile. It’s also about the same number of deaths reported from valley fever every year.
When it comes to the number of people who suffer from the disease but don’t die, it’s no contest. Researchers estimate that more than 150,000 suffer from valley fever every year. Only about 13,000 cases were properly diagnosed and reported in 2011. There were 712 cases of West Nile. So whether there are 13 times the number of cases of Valley Fever or 150 times, the difference is wide.
And yet you haven’t heard about valley fever.
As one CDC epidemiologist recently told me, “It’s like valley fever has been around so long that nobody talks about it anymore.”
A new project that Center for Health Journalism Digital launched this weekend hopes to change that. We’re calling it the Reporting On Health Collaborative, and it involves 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, and the Voice of OC in Santa Ana. It’s an initiative of the California Endowment Health Journalism Fellowships at the University of Southern California’s Annenberg School for Communication and Journalism.
I have been the project manager for a team of terrific reporters, editors, photographers, and graphic artists working hard on this series since June. I told you a little bit about it in August. We’re calling it Just One Breath, because once you breathe in the cocci fungus, you never get rid of it.
In the coming weeks, the team will explore the long history of inaction by government agencies, the tricky science of studying the disease, the high costs to patients and taxpayers, and the lack of interest in funding treatments and vaccines.
Michelle Levander, Reporting On Health’s editor and one of the most ambitious journalists you will ever meet, officially launched the series this weekend with a post that explained how we are trying to start a community conversation.
There is a role for everyone ranging from concerned locals to patients to health care providers, businesses and farm interests, community groups and non-profits. The California Endowment, which funds our programs, including the Reporting on Health Collaborative, is encouraging this new direction. Mary Lou Fulton, a senior program manager, had a distinguished history as an innovator in community media before entering the foundation world. She finds great value in thinking of the publication of journalistic projects as a starting point not an end point.
We are learning as we seek to connect with community leaders in the San Joaquin Valley. And we are relying on the wisdom of friends, thinkers like Manny Hernandez, who has built a potent community around diabetes with Tu Diabetes, an international online community for people with diabetes. At a recent forum, Donna Hill, chair of the foundation board that governs the Tu Diabetes site, shared how she organized her friends from Tu Diabetes to successfully prod a major pharmaceutical company to renew its effort to take a promising diabetes treatment to market. It had placed that project on the back burner.
I can’t wait to hear your ideas. Send me a note at email@example.com or via Twitter @wheisel.
Photo credit: Craig Kohlruss/Fresno Bee: Dust storms like this one that blasted Fresno in June can carry millions of spores fromthe fungus that causes Valley Fever.