San Joaquin Valley residents, doctors and experts demanding improvements in the way valley fever is studied, diagnosed and treated shared their concerns during a town hall meeting hosted by state Sen. Michael Rubio, D-Shafter, in Bakersfield on Friday.
Experts stressed the need for earlier diagnosis of the disease. That requires better education about the disease for providers and the public, they said.
"To diagnose valley fever, first of all you have to suspect it," said Dr. Augustine Munoz, director of pulmonary medicine at Kern Medical Center. "If you don't suspect it, you'll never find it."
Patients often experience a wide variety of symptoms, leading doctors unfamiliar with valley fever to misdiagnose the illness. For some people, that means undergoing unnecessary surgeries and courses of antibiotics, which have no impact on the fungus. For others, that means their disease goes undetected and untreated.
Doctors also called for better treatments for the disease. Munoz spoke about the harsh impact of the drugs, which patients may need to take for long periods of time.
Public health experts and researchers emphasized the need for more funding for valley fever-related research, including developing better tests to identify the disease and a vaccine.
At the federal level, the National Institutes of Health has largely neglected research funding for the disease. Valley fever-related research projects have received about $25 million over the past 12 years. By comparison, West Nile virus has received $585 million from NIH since 2000.
Meanwhile, policymakers highlighted the costs the disease imposes on taxpayers and the state.
Dr. Michael MacLean, Kings County health officer, spoke of the cost of treating inmates who contract valley fever in the state's prisons. The state prison system foots a bill of about $23.4 million each year for sending inmates with valley fever to hospitals outside the prison, guarding these patients and covering their antifungal treatments.
He also expressed concern that blacks are disappropriately incarcerated and also are at greater risk for the serious disseminated form of the disease.
A report by California Correctional Health Care Services found that the rate of black inmates who died from valley fever was twice that of non-black California inmates.
"We should have concern that there is a very significant racial disparity going on with respect to inmates in California and valley fever," MacLean said.
The forum also touched on creating best practices for diagnosing and reporting valley fever. Kirt Emery, Kern County Public Health Services Department epidemiologist, talked about the efforts to better track the disease.
"We need other counties to step to the plate and fill out that form (reporting valley fever). We need a consistant form that people are going to fill out," Emery said.
Those at the meeting encouraged Rubio to help raise the profile of the disease and establish funding for research.
"We need everybody, whether they're infected or not, to write their state representatives for state and federal funding for research and development," said Tammy Schaefer of from San Luis Obispo County. She described how her husband, Todd, was very ill and repeatedly misdiagnosed, until it was determined he had spinal fungal meningitis.
Reading from a handwritten note, 7-year-old Emily Gorospe, of Delano, described how the disease has changed her life, limiting how much she can dance and forcing her to stay inside during recesss on days when air quality is poor.
"The X-rays every month show the spot (on my lungs) is smaller. I want it to disappear so I can do the things I used to love to do," she said.
Rubio pledged to work with local, state and federal officials to increase public awareness of the disease, to develop better and more effective ways to treat the disease once it's diagnosed and "ultimately to find that vaccine so we can prevent it and hopefully irradicate it once and for all."
He also proposed creating a local research institution that could investigate valley fever.
"Let's have a competition: Who can come up with a better test so we can achieve it? Who can come up with a better treatment so we can have a cost-effective way of treating this very serious disease?" he said.