Two-day symposium to bring attention to valley fever

Bakersfield Californian staff writerSeptember 22, 2013 

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    SYMPOSIUM SCHEDULE

    Today – Local Awareness

    Kern County Department of Public Health Services, Hans Einstein Education Center, 1800 Mount Vernon Ave.

    4:30 to 5:30 p.m.: Valley Fever Survivors Reception.

    5:30 to 7 p.m.: Public forum with Rep. Kevin McCarthy, R- Bakersfield, Centers for Disease Control and Prevention Director Dr. Thomas Frieden, and National Institutes of Health Director Dr. Francis Collins. The public forum will be live streamed on bakersfield.com.

    Tuesday – Fighting Valley Fever – A Call to Action

    Cal State Bakersfield Multipurpose Room in the Student Union.

    7:30 a.m.: Check in.

    7:45 a.m.: Opening remarks.

    State of the Science Presentations

    8 to 10 a.m.: A Call to Action, presentations by Kern County researchers and others

    10 a.m. to 12:30 p.m.: Role of CDC and NIH, panels led by Frieden and Collins

    No-host lunch

    1 to 1:45 p.m.: The Congressional Valley Fever Task Force, panel including McCarthy, Rep. David Valadao, R-Hanford, and Rep. David Schweikert, R-Ariz.

    2 to 2:45 p.m.: California Public Policy and Challenges, featuring politicians and public health officials

    Break

    3 to 3:45 p.m.: Susceptible Populations and Valley Fever, featuring pediatricians

    4 to 4:45 p.m.: Pets/Animals and Valley Fever, featuring veterinarians

    For more information, call 661-327-3611 or email RSVP.McCarthy@mail.house.gov. RSVP not required, all sessions are open to the public.

    Parking for Monday’s event will be available in the lot in front of the Kern County Department of Public Health Services building. The Hans Einstein Education Center is on the first floor.

    Reserved parking for Tuesday’s program at CSUB will be available in Lots L and K. The space for Tuesday’s event is enough for 200 people.

    Source: Vince Fong, district director for Rep. Kevin McCarthy; Kern County Department of Public Health Services; Cal State Bakersfield.

— At age 26, Shane Hoover started planning for his death, two years after being diagnosed with valley fever.

The disease is caused by inhaling fungal spores that grow in the soil, and Hoover says it intensified after he stopped getting medical treatment because he could not afford it.

“He’d say, ‘I feel my body shutting down. I feel like it’s just a war inside of me that I can’t win,’” his mother, Kathleen Birks, said. “Our conversations became, ‘What do you want me to do with you when you die?’”

Hoover and his mother have little hope that a cure for the disease is around the corner. Valley fever advocates and researchers have long complained that the disease, also known as coccidioidomycosis, does not get enough attention or funding to create better awareness, diagnosis, treatments and a vaccine to prevent it.

But this week, the disease and the California valley hit hardest by it will receive unprecedented attention in a two-day valley fever symposium led by U.S. Rep. Kevin McCarthy, R-Bakersfield. Rarely do the leaders of the Centers for Disease Control and Prevention and the National Institutes of Health, two of the most powerful health institutions in the world, join on stage. Both will speak and listen to the community, raising hopes that the growing momentum concerning the disease will finally shake loose private and public money to make progress fighting valley fever.

“To my knowledge, it’s the first time that we’ve had all of these big names together and I think the timing is right,” said state Sen. Jean Fuller, R-Bakersfield, who will moderate a panel on California public health policy.

The event was prompted by the “Just One Breath” series about the disease published by The Californian, the Merced Sun-Star and other outlets that make up a consortium known as the Reporting on Health Collaborative.

“It’s a rare opportunity to have some of the most important minds and decision makers in the world of public health (together) focused on one disease,” said Dr. Benjamin Park, who leads the epidemiology team in the CDC’s mycotic diseases branch.

GATHERING BIG NAMES IN PUBLIC HEALTH

The symposium is open to the public and begins this afternoon with the reception for survivors at the Kern County Public Health Services Department. The reception will be followed by a forum with McCarthy, CDC director Dr. Thomas Frieden and NIH director Dr. Francis Collins.

“It’s very important that the survivors come out and show that we’re fighting,” said Jessica Einstein, director of communications for the Valley Fever Americas Foundation.

The symposium will continue Tuesday with physicians, public health officials and politicians sharing what they know about valley fever at California State University, Bakersfield.

Dr. Paul Krogstad, a professor of pediatrics and pharmacology at the David Geffen School of Medicine at UCLA, will speak about the symptoms and best treatments for valley fever in children. Children are incredibly vulnerable to developing serious cases of the disease, Krogstad said.

“Prevention and cure for those already affected are goals that we should set for ourselves,” Krogstad said. “If you have meningitis (caused by valley fever), you will likely be on lifelong medication.”

BUILDING MOMENTUM

The symposium arrives as valley fever is riding a swell of political attention and media coverage. McCarthy has started a congressional valley fever task force and urged the U.S. Food and Drug Administration to waive a fee in order to make a skin test for the disease available.

Dr. Michael MacLean, Kings County health officer, said the yearlong “Just One Breath” reporting project did “a remarkable amount” to draw attention to valley fever. The series chronicled the rise in valley fever cases, the toll the disease takes on people, and the lack of attention to the deadly illness.

“(The symposium is) more than rare; I think it’s unprecedented,” MacLean said. “I’m not sure this would have happened without the awareness (the series) raised.”

The presenters said meaningful cooperation among researchers, policymakers, physicians and communities is needed to take on valley fever long term. They talked about the way similar coalitions rallied to advance the science behind diabetes, HIV/AIDS and other conditions.

“It’s one disease and it should be a collaboration of anybody who wants to help solve it. This forum in Bakersfield is an opportunity to forge that collaboration,” said Dr. John Galgiani, director of the Valley Fever Center for Excellence and a professor at the University of Arizona.

Kirt Emery, Kern County epidemiologist, has seen interest in valley fever spike when cases peaked first in the early ’90s and again in recent years. This time, he hopes the disease will not fade from the limelight until the next epidemic.

“What I’m hoping is that we can sustain the excitement, the activity and really do something that matters,” he said.

KEEPING UP THE FIGHT

For Hoover, the symposium is a chance to encourage other valley fever survivors who feel like giving up.

Hoover joked with his mother last Wednesday afternoon after one of three intravenous treatments of antifungal medication that he undergoes every week. Now his mother is helping him pay for his medications.

“I’m better at it than I thought I was gonna be,” he said and laughed.

But the medical bills continue to pile up. Hoover lives in a trailer in the front of his mother’s home. She and her husband have shelved remodeling plans to cover the her son’s costs.

“He’s still deathly ill. The doctors still tell us that the battle isn’t even over yet,” Birks said. “They don’t even know if it will end.”

Birks hopes that by going to the survivors reception with Hoover that she can push the cause forward, closer to a vaccine that could protect her 16 grandchildren.

“Even if you’ve lost someone to valley fever you need to (attend the reception),” Birks said. “You need to stand up for what’s ours, and what’s ours are these children and our children’s children. This is life and death.”

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