Just One Breath
10:29 am
Mon March 18, 2013

Valley Fever Advocates See Hope For New Funding, New Laws

For Central California families impacted by valley fever, it seemed like the long-ignored disease was finally gaining attention.

"Good afternoon everyone," said former State Senator Michael Rubio, as he welcomed people to a town hall meeting on valley fever, held last fall in Bakersfield. "I want to thank you for participating and joining us."

"My goal is to listen today and then capture a handful of action items, so that we can go back to Sacramento and introduce some legislation to move the ball forward on this very important subject."

Following that meeting, Rubio drafted two pieces of valley fever-related legislation. One of Rubio’s planned bills would have required mandatory valley fever training for physicians. The other would have allocated money toward valley fever research.

He was also named the chairman of the new Senate Select Committee on Valley Fever. It was expected to hold hearings this summer to inform future legislation, and counted two other Central Valley legislators, Republicans and Democrats, as members.

Rubio’s actions followed the publication last fall of the Reporting on Health Collaborative’s ‘Just One Breath’ series on valley fever. The series highlighted the lack of awareness of valley fever and government agencies’ history of inaction regarding the disease. Valley Public Radio is a partner in the collaborative.

Valley fever patients, advocates and health experts, began to view Rubio as the champion that would finally shine a needed light on the disease. But Rubio abruptly resigned his seat in February to spend more time with family and assume a job with Chevron.

And those efforts were left in limbo. Rubio failed to introduce either of the valley fever bills before the legislature’s Feb. 22 deadline. The fledgling valley fever committee was left without a leader.

San Luis Obispo County resident Tammy Schaefer was disappointed to hear the news. She was already working to support Rubio's physician education bill by collecting stories from valley fever patients whose diseases went misdiagnosed. Her advocacy has personal significance: She believes if doctors had diagnosed her husband Todd’s valley fever earlier, the fungus might not have spread.

"When I heard that (Rubio) had resigned, I was completely deflated, and felt like everything we'd been working toward and fighting for was going to be completely lost," she said.

But about three weeks after Rubio’s resignation, Tammy and Todd Schaefer and others are feeling hopeful again, buoyed by steps – albeit small ones – that indicate lawmakers’ continued interest in the disease.

"At this point, it's something that I'm not going to just lie down and accept defeat." - Tammy Schaefer

    Stockton Democrat Sen. Cathleen Galigiani held a seat on the valley fever committee. According to an aide, she has requested to become its new chairperson. She declined to be interviewed for this story. But Bakersfield Republican Sen. Jean Fuller, another committee member, pledged to raise valley fever’s profile among her peers.

"Senator Rubio was critical and he was a great champion, but there will be others in the Senate, there always are, who will step forward and work with us," Fuller said.

In addition to those efforts, two Central Valley Assemblymembers say they are exploring ways to support valley fever-related research at the University of California, Merced. Already, UC Merced and Children’s Hospital Central California have received seed funding for a valley fever-related research project. The university is also exploring two other research projects.

Fresno Democrat Assemblymember Henry T. Perea said he would use the upcoming budgeting process to try to allocate money to UC Merced for valley fever-related research. Bakersfield Democrat Assemblyman Rudy Salas said he plans to meet soon with university researchers, to determine what resources they need to move forward.

"I want to learn more from them, what exactly they need, what resources they need, what doors they need opened, so they can continue to research valley fever, and find out how we can move forward," Salas said.

Valley fever advocate Tammy Schaefer is confident that another legislator will take up the torch for valley fever.

"I think there are legislative people out there that will care enough about this that will continue it, but we're going to have to move on from Senator Rubio's resignation and find somebody else that can assist us in this area," Schaefer said. "At this point, it's something that I'm not going to just lie down and accept defeat."

Kings County health officer Dr. Michael MacLean is also committed to backing valley fever legislation this year and next, if necessary. He also supported Rubio’s physician education bill, and had provided feedback on a draft.

"There is a continuing need for this and I will continue to try to work for it," MacLean said. "If we don't get it this session, we'll be back."

And that's a good thing for Central California. Because the fungus that causes valley fever is not going away.