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Just One Breath: Valley fever advocates see hope for new funding, new laws

Government Response to Valley Fever

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Just One Breath: Valley fever advocates see hope for new funding, new laws

In the latest installment of the Reporting on Health Collaborative's multi-part series on valley fever, we chronicle the initial efforts by legislators to bring needed resources and attention to the disease.

Friday, March 15, 2013

BYREBECCA PLEVIN, Reporting on Health Collaborative

FRESNO — For the first time in many years, San Luis Obispo County resident Todd Schaefer felt optimistic. Local legislators were poised to take action to bring in funds and provide greater visibility for valley fever, the terrible disease that had robbed him of his health.

Just the sight of the myriad medications Todd Schaefer must take for his valley fever makes him feel ill. A side-effect of the medications is nausea and vomiting. Credit Laura Dickinson/ Vida en el Valle

Last fall, state Sen. Michael Rubio, D-Shafter, held a town hall meeting on valley fever in Bakersfield that drew widespread local attention. Rubio drafted two pieces of valley fever-related legislation afterward and was named chairman of the new Senate Select Committee on Valley Fever. The Committee planned to hold hearings this summer to plan future legislation and counted two other Central Valley legislators, Republicans and Democrats, as members.

Rubio’s actions followed the publication this past fall of the Reporting on Health Collaborative’s “Just One Breath” series on valley fever. The series highlighted government agencies’ history of inaction regarding the disease, widespread problems of misdiagnosis and the lack of resources to develop new drugs or a vaccine.

Schaefer and his wife, Tammy saw Rubio as the champion that would finally shine a needed light on the disease. But when Rubio abruptly resigned his seat on Feb. 22, those efforts were left in limbo.

One of Rubio’s planned bills would have required mandatory valley fever training for physicians and the other would have allocated money toward valley fever research, according to an aide to Rubio. But neither was introduced before the legislature’s Feb. 22 deadline for new legislation in the upcoming session.

 “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,” Tammy Schaefer said. She had already begun collecting stories of valley fever patients whose diseases went misdiagnosed to support Rubio’s physician education bill.

But about three weeks after Rubio’s resignation, the Schaefers and others are feeling hopeful again, buoyed by steps — albeit small ones — that indicate lawmakers’ continued interest.

State Sen. Cathleen Galgiani, D-Stockton, who held a seat on the valley fever committee, has requested to become its new chairperson, according to an aide. Galgiani declined to be interviewed for this story, but state Sen. Jean Fuller, R-Bakersfield, another committee member, pledged to raise valley fever’s profile among her peers.

“Senator Rubio was critical and 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.

And two Central Valley assemblymen say they are exploring ways to support valley fever-related research at the University of California, Merced.

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

UC Merced and Children’s Hospital Central California in Madera have received seed funding for one research project. The university is also exploring two other research projects.

But that effort would require strong community support, Perea said.

Dr. Michael MacLean, Kings County public health officer. photo credit: The Hanford Sentinel.

“It’s one of those things where, unless there’s a big constituency behind it, pushing it, it’s going to be hard,” he said. “You’ve got to raise the profile in order to get the attention.”

Kings County health officer Dr. Michael MacLean is committed to backing valley fever-related legislation this year and next, if necessary. MacLean 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.”

About This Series

This project results from an innovative reporting venture – the Center for Health Journalism Collaborative – which currently involves the Bakersfield Californian, Radio Bilingüe in Fresno, Valley Public Radio in Fresno and Bakersfield, Vida en el Valle in Fresno, Hanford Sentinel, the Voice of OC in Santa Ana, the Arizona Daily Star in Tucson, La Estrella de Tucsón and the Center for Health Journalism. The collaborative is an initiative of the Center for Health Journalism at the University of Southern California’s Annenberg School for Communication and Journalism.

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