FRESNO — Berenice Parra was sick for eight months before doctors realized she had a severe form of the fungal disease valley fever.
"I was literally dying without a cure," said Parra, a 25-year-old mother of three from Arvin, in Kern County.
Desperate for relief and concerned that doctors in the Bakersfield area weren't taking her illness seriously, she drove 245 miles to Tijuana, three times, to see a doctor recommended by relatives.
Her health insurance wouldn't cover those visits, so she paid out of pocket about $2,000. Parra and her husband missed so much work that the family sank into debt.
With valley fever cases soaring in the Southwest, more and more people's lives and finances are being upended. Misdiagnosis of the disease adds to the costs for doctor's visits, hospitalizations and long-term treatment with drugs.
At more than $100,000 for a typical hospital stay, valley fever, on average, is more costly to treat than any of California's 25 most common conditions requiring hospitalization, according to a state analysis of 2010 data.
It's harder to pay those hospital bills when you're out of work. Valley fever forces people to miss about three weeks of work, on average, according to recent studies, and that lost productivity is costly for businesses, too.
Above all, valley fever is a drain on taxpayers.
Through Medicare, Medicaid and other government programs, taxpayers cover a large percentage of the valley fever bill.
An estimated 60 percent of valley-fever-related hospitalizations -- resulting in charges of close to $2 billion over 10 years in California alone -- are covered by government programs, according to preliminary data from the California Department of Public Health.
"It's an incredibly expensive disease to treat," especially if a patient develops complications or conditions requiring surgery, said Dr. George Thompson, assistant professor of medicine at the University of California at Davis, and the assistant director of the school's coccidioidomycosis serology laboratory.
Difficult to diagnose
Even in Kern County, where cases of valley fever are more common than anywhere else in the state, no doctor seemed to recognize Parra's symptoms. So they misdiagnosed her repeatedly.
She was prescribed Xanax when she described pain in her chest, and she underwent a biopsy on her knee while the doctors searched for a cancer that didn't exist. "Aggravating factors -- everything," one doctor noted.
When she was finally diagnosed, the valley fever had spread and was causing coccidioidal meningitis -- brain swelling. She was hospitalized, and the bill reached $52,000, mostly covered by her insurance.
The total charge statewide of hospitalizing people with cases of valley fever ranging from pneumonia-like symptoms to life-threatening cases such as Parra's, was close to $140 million in 2010, according to an analysis by the Office of Statewide Health Planning and Development.
That represents a 28 percent increase in costs just since 2008. Nearly half of those charges came from the eight-county San Joaquin Valley, which holds about 10 percent of the state's population.
That sum reflects all charges for services, based on a hospital's established rates. Patients and their insurance companies typically pay a fraction of that charge, however, because each payer negotiates different rates.
In 2010, the average valley-fever-related hospital stay was more than 10 days, and the average total charge per individual for hospitalization was $102,166, according the state health planning office.
By comparison, septi- cemia, a serious life-threatening blood infection more widely known among clinicians, has an average charge per stay of $72,174, and an average length of hospital stay of 7.1 days, according to the health planning office.
Behind those numbers are families and communities that have been devastated by valley fever.
Parra's 9-year-old daughter, Ilene Jiménez, typed a text message to her mom: "I feel so bad for my mom I just wish I could turn to an angel and help her with valley fever!!!!"
Out of work for weeks
When people are stricken with valley fever, it can have an enormous impact on their ability to work. Parra eventually had to quit her job picking and packing grapes, and her husband missed long stretches of work while caring for her.
People miss a median of 14 workdays -- or about three weeks of work -- because of valley fever, according to a study by the Arizona Department of Health Services that was published in Emerging Infectious Diseases in 2010.
The study of 493 people found a median of 47 days of decreased activities, and a median of 120 days -- or four months -- of symptoms. In comparison, people are sick with the flu for about one week, said Clarisse Tsang, acting infectious disease epidemiology program manager at the Arizona Department of Health Services and lead author of the report.
"It is something that doesn't just go away," Tsang said. "It prevents people from doing their normal daily activities."
Taxpayers on the hook
Parra was too sick and weak to work for a full year after she was diagnosed with valley fever.
With so much income lost, Parra and her husband applied for government help. Parra said she didn't like being a burden on anyone, but she felt like she didn't have a choice.
Through the federal Supplemental Nutrition Assistance Program, they received $250 each month for about one year, Parra said. During that time, she also received $50 disability payments every two weeks, and Medi-Cal assistance.
Local and state governments are often on the hook for valley fever -- whether it means more people relying on the safety net for support or paying hefty workers compensation claims to government employees who became ill on the job.
The total charges statewide for valley-fever-related hospitalizations for government-funded health care programs, such as Medicare, Medi-Cal and county indigent programs, was more than $1.1 billion between 2000 and 2010, according to preliminary data from the California Department of Public Health.
Those are just the costs tied directly to an accurate diagnosis of the disease. Given that an estimated 150,000 people suffer from valley fever every year but fewer than 15,000 are diagnosed, the cost to taxpayers likely is much higher.
No one knows how much is spent on unnecessary tests, treatments and hospital stays for valley fever cases that are misdiagnosed, such as Parra's.
Frequent misdiagnoses can make it difficult for government agencies and private employers to determine the true cost of workers compensation related to valley fever, too.
The city of Bakersfield has paid more than $8 million in workers compensation claims related to valley fever since 2000. That total includes both the amount paid on a claim and estimated future liabilities, said city risk manager Jena L. Covey.
'We had so many plans'
A year and a half after her valley fever diagnosis, Parra's health is recovering, but her family's financial situation remains uncertain.
She works as a teacher's assistant, but she doesn't have the energy she once had. "My fatigue level hasn't decreased at all," she said. "I have to call into work often because I can't get off the bed, and I'm too tired to go to work."
She had intended to begin taking courses at Bakersfield College in fall 2010 but had to delay starting until a few weeks ago. Her family had been preparing to buy a house but no longer has the resources.
And then there are the credit card bills. Parra thinks it may take years to climb out of debt.
"We had so many plans," she said.
Yesenia Amaro, Tracy Wood and Joe Goldeen contributed to this report.
JUST ONE BREATH
The latest part in an occasional series about valley fever.
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ABOUT THE SERIES
Why are people still dying from valley fever and tens of thousands getting sick? Misdiagnosis. A lack of public awareness. And a long history of inaction by government agencies. In this series, we will explore the startling rise of cases, the science of studying the disease, the high costs to patients and taxpayers, the weak federal and private interest in funding treatments and vaccines, and the public health response.