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Just One Breath
Mon September 23, 2013
'Unprecedented' Meeting Focuses On Valley Fever
Kings County health officer Dr. Michael MacLean uses one word to sum up this week’s valley fever symposium: 'Unprecedented.'
He says it’s a big deal that the leaders of the Centers for Disease Control and the National Institutes of Health are gathering in Bakersfield to focus their attention on an orphan disease that mainly affects the southwestern United States.
“Because it doesn’t affect a whole lot of people, it’s very difficult to get resources to learn about the disease, and this unprecedented symposium with CDC and NIH is a very good beginning toward addressing all the unknowns we have about valley fever,” he says.
The two-day meeting is intended to create greater awareness of valley fever, which is chronically misdiagnosed. Bakersfield Congressman Kevin McCarthy says it’s also an opportunity to discuss best practices for treating the disease, and work towards developing a vaccine to prevent it.
“The ultimate goal is the vaccine, but what you have to do first is put a framework and plan together to get there, so you have to have everybody that wants to be involved in on it, and that’s what the symposium does,” says McCarthy, who’s hosting the event.
Tonight, at the Kern County health department, the symposium will feature a public forum with McCarthy, as well as CDC director Dr. Thomas Frieden, and NIH director Dr. Francis Collins. Tomorrow, at CSU Bakersfield, top valley fever researchers, public health officials and lawmakers will discuss the fungal disease. The event is free and open to the public.
Dr. John Galgiani, director of the Valley Fever Center for Excellence at the University of Arizona, says the meeting is an important step in the long process of raising awareness of valley fever, generating more funding for disease research, and eventually developing a vaccine.
“It’s not just a one-symposium kind of problem,” Galgiani says. “It’s going to need after awareness, decisions and commitments to make these possible solutions possible.”
Community and patient groups are excited about the event. Jessica Einstein, director of the Valley Fever Americas Foundation in Bakersfield, says the meeting will be a success if it leads to further opportunities for research.
“We want to use the connections that are made at this event to really power full-steam ahead and make sure we get something written up,” she says. “We want to fund new research.”
Whether or not progress is made, though, could depend, in part, on how well community members rally around the disease, says Barron Lerner, a professor of medicine at New York University, and an author of several books about patient lobbies and movements.
“I think we like to live in a world where the diseases that cause the most harm would get the most funding, and the diseases that weren’t so important would get less funding,” Lerner says. “But the fact of the matter is, that groups that scream the loudest and have the best stories often get the most resources.”
The region’s valley fever community might be in the infancy stages of starting this type of awareness effort. Einstein says she will attend tonight’s survivor’s reception at the symposium, in the hopes of connecting with people who want to start a support group.
“We do have people who are suffering, and have suffered from this disease,” Einstein says. “If we can help them by facilitating the beginning of a support group, then that would be our first goal.”
Still, efforts to shine a light on the disease could be hampered by a long-standing problem: One reason that valley fever has struggled to gain attention and funding is that it impacts an overlooked region of California, Lerner says.
“That’s an unfortunate reality of all of these diseases, that to the degree that the disease is more likely to affect a more affluent population, it’s going to be easier to raise the profile,” he says.
But the symposium could be a milestone in the efforts to curb this orphan disease that disproportionately affects the Central Valley.
Just One Breath
Just One Breath