VALERIE GOROSPE: It was the very first weekend of May and she woke up from her sleep just not feeling good and then she was just really tired and she had a cough that wouldn’t go away. Finally, there was a doctor that said this isn’t pneumonia. But he knew just by looking at the spot on the X-ray, he recognized it right away that it was Valley Fever.
EMILY GOROSPE: I kept on asking my mom, why did Valley Fever pick me? And she didn’t know the answer. I guess it just- I breathed in and it just went into my lungs.
JASON SHOULTZ: 40 percent of people who come down with symptoms are able to keep the fungus in check in their lungs. But for others, the cocci fungus doesn’t stay put. It can spread to other parts of the body causing everything from skin lesions to serious joint pain, or worse.
FRANCIS COLLINS: And if it spreads, particularly if it spreads to the brain or the meninges that cover around the brain, then that is a disease that is going to have huge consequences for that person for their entire life.
JASON SHOULTZ: But Valley Fever in its early stages isn’t always taken seriously. Even in communities in Arizona or California’s San Joaquin Valley where the fungus is found throughout the soil.
KATHY TERRELL: What they’ve heard is, “Oh it’s just like the flu. And your immune system can fight it unless your immune system is low.” That’s not always the case. There are very healthy people who get it and can’t fight it off.
JASON SHOULTZ: Kathy Terrell’s brother Max was a healthy, active 56-year- old who contracted Valley Fever. It was misdiagnosed as Tuberculosis and spread throughout his body. He died five months later.
KATHY TERRELL: I would not wish this disease on anyone.
CLAUDIA JONAH: For those few people that are going to get severe illness, the faster they get the correct diagnosis, they have the better chance of having a better recovery, rather than a prolonged recovery if it takes two or three months to get the diagnosis.
JASON SHOULTZ: Misdiagnosis is just one of the challenges of Valley Fever. Because people respond so differently to the disease, and anti-fungal drugs can have negative side-effects, there is actually disagreement on treatment.
ROYCE JOHNSON: We treat basically almost everyone, whereas in Arizona, they’re more selective: they try and look for people that seem to have risk factors for doing poorly before they initiate therapy. We don’t have data that proves whose approach is actually best.
GEORGE THOMPSON: We don’t even know if early treatment alters the course. We’ve long speculated that, but it’s never been proven in a randomized trial the way we’ve known bacterial pneumonia responds to antibiotics, patients get better faster. For cocci, some people think that early treatment actually may alter the immune response enough that symptoms are prolonged.
JERRY GALANG: I’m half Filipino, my dad was born and raised in the Philippines and moved to Chicago, met my mother, they got married and they had me.
JASON SHOULTZ: One thing Valley Fever experts do know, the disease attacks non-Caucasians, especially Filipinos at a much higher rate.
JERRY GALANG: I was doing some yard work, with using a Bobcat, moving dirt and so I was covered with dust in Simi Valley California for about two days. And three weeks later I was attending a computer class in Irvine and all of a sudden I was getting stabbing pains in my chest like someone sticking a knife in with every breath I took.
GEORGE THOMPSON: That’s a preprogrammed immune response and what that preprogram means is it’s not something that you can vaccinate, it’s not something that your body has ever even seen before, but it’s the way your body deals with new exposures.
JASON SHOULTZ: Today Jerry is in San Diego visiting Robin Smith, also a Valley Fever survivor. .
ROBIN SMITH: I was in a coma for ten days, not expected to survive. The doctors of course didn’t communicate that directly, but it was later told to us that my odds of survival were one-tenth of one percent.
JASON SHOULTZ: Cocci Meningitis nearly claimed his life and took away the use of his legs. Today, Robin is the coordinator of disabilities for the San Diego Padres
ROBIN SMITH: And one of the things that I’ve found, is that can be such an isolating experience to have a diagnosis like Valley Fever. And like Jerry says, it’s almost like you’re bobbing on the ocean. You’re that little speck in the middle of a sea blue that feels very, very isolated.
JASON SHOULTZ: Attention and research funding given to Valley Fever pales in comparison to other high profile diseases. From 1999 to 2012 there were about 37,000 West Nile Virus cases. But in one year alone, 2011, there were 22,000 reported cases of Valley Fever, almost two-thirds as many. Despite that, the National Institutes of Health funding for Valley Fever research is just four percent of West Nile.
Because there is no cure, patients who have survived Valley Fever end up regularly taking anti-fungal medications to prevent it from spreading again.
JACK MILLER: I say it swelled like a watermelon.
JASON SHOULTZ: The cocci fungus attacked Jack Miller’s ankle in 2004.
JACK MILLER: I mean it was very large, because a s it set up inside my ankle, it’s just breeding or it’s multiplying or doing whatever it’s doing, but it’s not going anywhere and it’s staying right there.
JASON SHOULTZ: Jack didn’t even live in the endemic Valley Fever area when he caught the disease. Turns out he breathed in the spores while simply driving through the San Joaquin Valley.
JACK MILLER: Window, halfway cracked or whatever, you can’t filter out a spore, you know. If it was going to get up in the air and find its way to my nose or nostrils you know.
JASON SHOULTZ: A decade after that fateful breath in the cab of his truck, Jack now drives 1,700 miles round trip from Idaho to UC Davis Medical Center several times each year for treatment. He’ll take anti-fungal medication for the rest of his life.
JACK MILLER: I’m fortunate that my employer covers the cost of my medicine– ’cause right now I think it’s about $3,500-4,000 a month. The medicine I’m on to go ahead to keep it squashed
JASON SHOULTZ: Valley Fever is also running rampant here: inside some of California’s San Joaquin Valley prisons. The disease has been blamed for the deaths of dozens of prisoners and even prison staff. The state spends about $23 million a year caring for prisoners with Valley Fever.
ROBIN SMITH: If you breathe, you’re susceptible to Valley Fever, is essentially what it comes down to.
FRANCIS COLLINS: My dream would be that if you walk in the door with pneumonia, or even just with fever for a couple of days, you’re not quite sure what it is, that there’s a simple, inexpensive test that will say, okay, you got Valley Fever, you don’t. We don’t have that right now.