In his mid-20s, Shane Hoover started planning for his death.
Hoover was diagnosed with valley fever, which is caused by inhaling fungal spores that grow in the soil, in 2010. He took medications for a while that kept it at bay. But he says he could not afford to keep paying for the drugs and, when he stopped, the disease intensified.
"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?'"
For decades, valley fever patients and their families have fought what felt like an unwinnable war, and many have lost. 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 next 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 U.S. Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) -- two of the most powerful health institutions in the world -- join the stage. Both will speak and listen to the community, raising hopes that the growing momentum around the disease will finally shake loose the 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 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 Monday afternoon with the reception for survivors at the Kern County Public Health Services Department. The reception will be followed by a forum with McCarthy, Frieden and 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 Cal State 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."
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 year-long "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 in first 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 following 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 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 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, 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."