Promise and frustration: Valley fever advocates and legislators vow to ‘press harder’ after governor rejects bill

Nick Ellis / For The Californian

In this file photo, State Assemblyman Rudy Salas, D-Bakersfield, speaks during a town hall meeting. Salas' valley fever legislation, AB 1279, was vetoed by the governor earlier this month, striking a blow for valley fever advocates.

Editor’s Note: The Center for Health Journalism Collaborative is an initiative of the Center for Health Journalism at the University of Southern California’s Annenberg School for Communication and Journalism

It currently involves Voice of OC, The Bakersfield Californian, Radio Bilingüe in Fresno, Valley Public Radio in Fresno and Bakersfield, Vida en el Valle in Fresno, the Arizona Daily Star in Tucson, La Estrella de Tucsón and CenterforHealthJournalism.org.

You can view previous work on valley fever here.

Even as valley fever cases are sharply increasing in Central California, Governor Jerry Brown has vetoed legislation that would have created programs to inform the public about the little-known respiratory disease.

AB 1279, authored by Rudy Salas, D-Bakersfield, initially promised $2 million in funding for valley fever awareness. It also would have addressed deficiencies in disease reporting guidelines uncovered by the Center for Health Journalism Collaborative, a consortium of media outlets across California and Arizona organized by the University of Southern California’s Center for Health Journalism.

There wasn’t a single state senator or assemblymember who voted against the bill.

It would have mandated the formation of a working group of health officers from endemic areas to identify best practices for reporting cases quickly; established a long-awaited improved monitoring system to track cases; and required local health agencies to alert the public of an epidemic if cases totaled more than five percent of an area’s total population.

By the time the bill reached the governor’s desk, however, it was more of a symbolic gesture than a robust piece of legislation. It was stripped down in the legislative process simply to require the California Department of Public Health to “develop outreach programs to educate the public about valley fever.”

No funding, no new programs, Brown says
Even that, however, would have been a step forward for a department that has been allocated no money for valley fever awareness and has historically done little to inform the public and medical professionals when cases are on the rise.

CDPH opposed the legislation because of the lack of funding to implement the bill’s new requirements, Salas said. The governor agreed in his veto message, listing funding as a key reason for rejecting the bill.

Senator Jean Fuller, R-Bakersfield has long pushed for more valley fever funding and had her share of legislative disappointments. She described the governor’s veto as a frustration. She secured an ongoing appropriation of $1 million for vaccine research in 2009, but that funding was cut by a senate budget subcommittee in 2010, Fuller said. She passed another bill worth $1 million in 2014, but the funding met a similar fate.

“I have no idea why it continues to not be supported,” Fuller said. “The number of cases are increasing, yet each time this bill comes through, the funding is stripped or the requirements of the bill are watered down.”

Valley fever survivors and advocates need to put pressure on the governor’s office to demand that he allocate money in the state’s public health budget for awareness, Fuller said.

“I’ve already talked with Assemblyman Salas and he’s agreed – we’re going to press the case next year even harder,” Fuller said. “We’re not going to let this stop us.”

Valley fever on the rise

Valley fever, the common name for Coccidioidomycosis (or cocci for short), can be acquired with the simple act of breathing. It’s caused by a fungus that grows in loamy desert climates throughout the southwestern United States. When that fungus gets disturbed in the soil, often through agricultural tilling and construction, fungal spores can get swept into the wind and inhaled. The majority of people who have valley fever don’t get sick, but others develop flu-like symptoms, including fever, cough and extreme fatigue that can last months. In rarer cases, the spores can spread to the bloodstream and lead to a lifetime of health issues, sometimes resulting in death.

The disease is endemic to Kern County and much of Arizona. In California alone, it infected 5,372 last year, making it the worst year for the disease since cases were made reportable in 1995. Arizona reported 6,101 cases in 2016. But doctors and researchers believe that the numbers don’t capture the full scope of the disease. The U.S. Centers for Disease Control and Prevention estimates 150,000 people go undiagnosed annually. Researchers blame a lack of awareness.

In the governor’s Oct. 3 veto message, he said the CDPH “already provides fact sheets, brochures, posters and other educational materials to raise awareness of this disease.”

Those low-budget forms of awareness have been criticized by public awareness campaign experts at GMMB, which developed the successful “Click it or Ticket” campaign. Madalene Milano, a partner at the firm, described such campaigns earlier this year as “way too passive,” and ineffective for how people live their lives now on social media.

The governor added that there is no money in the budget to expand the program. That obstacle didn’t stop Brown from signing legislation this month to provide free tuition to all first-year college students in California at an estimated cost of between $30 and $50 million annually, according to the State Department of Finance, which opposed the bill.

By the time Salas’ legislation worked its way through the Senate Appropriations Committee, funding was eliminated, but the expanded state outreach campaign would carry an annual cost of $580,000. There was no component in the legislation to fund that.

“Expanding the program would require additional resources that should be considered along with other funding requests as part of the budget process,” Brown wrote.

Rob Purdie, a member of the Bakersfield-based Valley Fever Americas Foundation and a survivor of the disease, said, “We look forward to educating the governor about the value of valley fever funding and encouraging him to put it in his next budget request.”

Purdie said VFAF is reorganizing and working with legislators to introduce another bill next year.

Assemblyman Vince Fong, R-Bakersfield, who co-authored the bill, said that the state “missed an opportunity to partner” with those working to combat valley fever.

“Residents of the Central Valley know that valley fever continues to be a significant public health concern. I will continue to work with other legislators to champion this important issue,” Fong said.

For every success, there are setbacks

The veto comes at a critical moment for cocci.

In the past two years, an antigen skin test has come on the market; Arizona researchers have completed one round of human trials for NikkomycinZ, a promising drug developed for valley fever that has cured the disease in lab mice; and Delta-CPS1, a vaccine project, is inching closer to being introduced for animals within a decade, with a potential pathway for humans.

But for every success, there are setbacks. Researchers developing NikkomycinZ have run out of their supply of the drug needed to start another phase of clinical trials and have depleted grant funds to make more. Without support from big pharma, getting the drug to market is years away.

In the meantime, researchers, advocates and policy makers preach the only solution they can: awareness.

“Awareness is the priority. I know firsthand what a cruel, ravaging disease this is and how hard it is to get treatment, and how hard it is to move forward once you’ve contracted it,” Fuller said. “We can’t stop until we get some help with this disease.”