FRESNO — Valley fever is a humbling disease. It can rob sufferers of their health, their life plans and their financial well-being. Uncertainty adds to the trauma.
There is no cure around the corner, no vaccine in the works and no well-organized patient group lobbying effectively for more policy attention. The result: Those who become ill often suffer in silence and feel alone.
That inattention is surprising and distressing to valley fever patients and the handful of researchers trying to make headway against the disease, which is caused by inhaling the spores of a fungus that grows in soil, particularly in the Central Valley and in Arizona.
Researchers estimate 150,000 people contract the disease every year and millions of dollars are spent treating them. The disease killed more than 3,000 people from 1990 to 2008, according to one study.
And the number of people being diagnosed with the disease is rapidly rising. Yet valley fever receives far less funding than diseases that affect fewer people, such as West Nile virus.
A three-month investigative series by the Reporting on Health Collaborative -- a consortium of seven California media outlets, including the Merced Sun-Star, and the USC Annenberg School of Journalism -- has found that doctors don't have very good medications to treat the disease, known as coccidioidomycosis, diagnostic tests are limited and understanding of the disease is behind that of other common illnesses.
"We're really quite often working in the Dark Ages," said Dr. Francesca Geertsma, a pediatric infectious disease specialist at the California Pacific Medical Center in San Francisco.
Coming out of the dark will require coordination and significant sums of money. The collaborative asked patients, physicians, researchers and government officials to identify steps that could be taken now to change the course of the disease.
Five key action areas emerged from those conversations with a rough timeline of targets for specific achievements:
Improve how doctors identify and care for valley fever patients immediately through training.
Implement a robust surveillance system to track the disease, especially in California, by 2014.
Develop better tests for the disease by 2015.
Bring to market modern treatments for valley fever by 2017.
Raise enough money to finish the work of creating a vaccine, the silver bullet in the fight against valley fever, by 2022.
Perhaps the quickest way to put a dent in valley fever is by increasing doctors' awareness of coccidioidomycosis so that they detect the potentially deadly disease earlier and get patients on the right course of treatment faster.
Coccidioidomycosis may be mistaken for a number of other ailments, delaying treatment and prolonging suffering.
When Dr. Raj Patel came to Bakersfield two decades ago, valley fever cases were surging and Patel found himself essentially taking a crash course in how to handle the disease.
"I had to learn firsthand, treating the patients, diagnosing patients, watching them deteriorate and heal," said Patel, who practices internal medicine at Preferred Family Care Physicians in Bakersfield, where he is a partner.
The situation remains much the same today.
Dr. John Galgiani, a professor at the University of Arizona and director of the Valley Fever Center for Excellence, said every year hundreds of new physicians, many of whom have trained outside the area, are licensed to practice medicine in areas prone to valley fever.
Dr. Navin Amin, an infectious disease specialist at Kern Medical Center, said the way to spread the word is through basic doctor-to-doctor training.
After the Reporting on Health Collaborative started publishing this series, Amin was invited to speak to Kaiser Permanente physicians in Kern County about the disease. Later, one of the Kaiser doctors who participated spotted a case of valley fever in a pregnant patient who had a bump on her leg, Amin said.
The California Department of Public Health does not have any funding dedicated specifically to the disease, according to an email from the department. It did recently receive a one-time $80,000 grant from the U.S Centers for Disease Control and Prevention to study valley fever and other fungal diseases.
Better tests needed
Faster, more accurate tests are needed to help doctors root out more cases of valley fever, experts said.
Physicians usually confirm suspected cases of valley fever by blood tests that show increases in the patient's antibodies. But some patients don't test positive even when they appear to be suffering from valley fever and respond well to an antifungal course of treatment.
Repeated testing may be needed because it takes time for a patient's antibodies to develop. The results can take anywhere from a few days to several weeks.
Emergency room workers may be reluctant to order the test because by the time the results come back, the patient is gone, Galgiani said.
Current antifungal treatments for valley fever can have harsh side effects and may let the disease spread before they work.
Bakersfield resident Diana Frizzelle has been taking an antifungal medication for more than a year to keep valley fever at bay.
She said her hair is falling out and her skin is dry because of the pills. She read the valley fever series in her newspaper hoping for some tidbit of information that would help her situation.
"I keep hoping because it's never going to go away," she said.
Galgiani is working on a drug called Nikkomycin Z and finds his work limited by the lack of financing. "The reason we don't know if it is a cure or not or how good it is, is because we don't have the money," Galgiani said.
Phase one safety trials in people have been conducted. And researchers are ready to see if the drug works in people who are infected with valley fever.
Galgiani received a $3 million grant from the National Institutes of Health but his center has struggled to produce enough of the drug to conduct an effective trial. If enough of the drug can be made, clinical trials could start in the fall of 2013, Galgiani said.
"We are moving it forward; we're just going very slowly," Galgiani said. With an investor's backing and an estimated $40 million, the drug could be ready in five years, Galgiani said, but, so far, no drug companies have signed up to fund the work.
The future of a vaccine also hinges on clearing financial hurdles. Funding in the past has been "chicken feed" compared to what would be needed to produce a vaccine, said Amin, the Bakersfield doctor.
The price tag for a vaccine could be double that of developing a new drug, according to Galgiani, at least $80 million.
Valley fever experts said a combination of federal, state and private money would likely be needed to bolster the efforts. Estimates of how long it could take to produce a vaccine varied among the researchers.
A revival of the consortium approach that helped spur progress in the past could help vaccine research today, Cole said. With better funding, more labs might take interest and join in the efforts, he said.
Valley fever's history is cyclical.
Enthusiastic people get a little money to make something happen, but then the money dries up, said Kirt Emery, Health Assessment and Epidemiology Program manager for the Kern County Public Health Services Department.
The efforts need the support of local governments, federal agencies, businesses and private foundations as well, he said. "If we're going to be successful, we've got to come up with really more of a business model of acquiring funds," Emery said.
A robust patient advocacy group with a dedicated leader might be able to further valley fever's cause more than anything, Emery said. "(Patients) can really move the money, in my opinion, easier than a lab director or an epidemiologist or a doctor," he said.
James Ranger, the lead pastor at New Life Center in Bakersfield, battled valley fever twice and has been shocked by the lack of awareness surrounding the disease ever since.
"I didn't have a clue that people died with (valley fever). I didn't have a clue that it would last for months and years," Ranger said.
Ranger's church hosts a valley fever benefit concert and is developing a valley fever support group hoping to educate more people about the potentially deadly disease.
The pastor said he is "stunned" that more churches and community leaders aren't taking on valley fever. "I don't see anybody waving their flag," Ranger said.
"Who's responsible? Who's leading this thing?" he asked. "It should be the leaders of the community, whoever that is."
Yesenia Amaro, Rebecca Plevin, Tracy Wood and Kellie Schmitt contributed to this report.
The Reporting on Health Collaborative asked readers to share their experiences with valley fever. Here are their stories, in their own words.
Anna Magaña, 36, Wasco: I was 16 years old and four months pregnant when I contracted valley fever. It was 1991. I woke up with red welts on my legs and my heels felt like they were on fire. I thought something had bit me. I also had headaches. Doctors initially thought I had meningitis. Once I was diagnosed with valley fever, I had to receive Amphotericin B three to four times a week. That treatment led to convulsionlike seizures and I had to take Demorol to calm them down. ... I was told that the only other case of a pregnant woman who had valley fever was in Arizona and that the mother died after giving birth. I started freaking out. My daughter Brianna was born June 21, 1992, three weeks early. They kept us both in the hospital to make sure my treatments hadn't affected her, but, luckily, she had no effects. ... Being so young, I don't think I realized the gravity of my condition.
Edna Wayne, 80, Bakersfield: I was about eight years old and it was the first day of school. The nurse inspected us and decided I had scarlet fever. They took me to Kern General Hospital and put me in isolation on the fifth floor. I spent three months in isolation; my mother didn't even get to see me. She thought the doctors knew what they were doing. ... Most people never heard of valley fever in those days. ... The reason I found out that's what I had was in Sacramento years later. I went to a clinic there for what turned out to be a valley fever flare-up. My whole body ached. They asked me: "When did you have valley fever?" I told them that I've never had it. They said "Yes, you have. They just misdiagnosed you."
Tyler Thomas, 7, as told by mother Sonya Hodge, Bakersfield, 44: Months after my son Tyler Thomas was born, we noticed a knot on the right side of his head that felt like hard bone. The doctor kept saying it was a calcium deposit. But when he started having night sweats and had frequent colds, we had a feeling something more was wrong. He also developed what looked like boils on his pelvic area and leg. I took him to a different doctor. When he was about a year old, his eye swelled up as if someone had hit him or he had fallen. The doctors sent us to UCLA where they did a biopsy. They realized he had disseminated valley fever. The valley fever had spread to his skull, and he had what's called cranial osteomyelitis. From that point on, we never spent a full month at home. Tyler received the anti-fungal medication amphotericin B. It was so harsh, ... he had a seizure and a fever. It was terrifying. ... Back at home, I had to administer IV medications without nursing skills. Once, when I was administering the medication, the Amphotericin was too strong, and it looked like he was paralyzed from the neck down. ... (At UCLA) they realized the amphotericin had stripped him of his body's nutrients. ... It came to the point where I picked up my son and ... I thought, "They don't have a cure. Was it worth him going through the pain and misery?" You could see it in his eyes. They finally got the valley fever to a level where it could be suppressed. But it never goes away. When Tyler was young, he never spoke. ... Finally, when he did speak, we couldn't understand a word he said. Some of the doctors believe that when the valley fever went into his head, it could have damaged the speech part. ... There needs to be more resources and awareness of resources. ... We need a vaccine.
Cheryl Youngblood, 61, Bakersfield: My husband Michael Youngblood was diagnosed with valley fever in 1997. He was off work for several months, taking the maximum dosage of Diflucan, as well as amphotericin B. ... He got better and was able to return to work. But in February 1999, he woke up vomiting and with a severe headache. He was diagnosed with cocci meningitis, which meant the valley fever had disseminated into his brain. ... He had more small strokes and other physical and mental issues. On Jan. 9, 2001, my big, strong healthy husband of 30 years died at age 49, a 144-pound shell of his former self. He left behind four children and two grandchildren. ... He was a volunteer for the valley fever vaccine trials of the early 1980s. He received the vaccine they were testing at that time. Had it been effective, he would be with us still today.