Provide names of other journalists involved.
Collaborative reporters were Kellie Schmitt, Rebecca Plevin, Yesenia Amaro, Tracy Wood, Rachel Cook and Joe Goldeen. (Rebecca Plevin and Rachel Cook are AHCJ members).
List date(s) this work was published or aired.
Multiple packages making up the series ran between Sept. 8, 2012, and Dec. 24, 2012, in The Bakersfield Californian. The series appeared in additional, smaller newspapers, on radio stations and on the Reporting on Health Collaborative website roughly between those same dates. For this contest we are submitting PDFs of key pieces of the series as they appeared in The Bakersfield Californian — minus some side bars and graphics to stay under the file upload limit — and a link to the Reporting on Health Collaborative website for a much easier look at all of the pieces.
Provide a brief synopsis of the story or stories, including any significant findings.
The number of valley fever cases has soared so high in recent years that health experts are calling it “The Second Epidemic.” In a series that ran over several months, we explored the rise of cases, the tricky science of studying the disease, the high costs to patients and taxpayers, the lack of private interest in funding treatments and vaccines, and the long history of inaction by government agencies. The problem is, while the disease kills far more people than many headline-grabbing illnesses combined, it affects a community not on the radar of major health policy players. We found five key ways this could be turned around: * Improve how doctors identify and care for valley fever patients immediately through training. * Implement a robust surveillance system to track the disease, especially in California. * Develop better tests for the disease. * Bring to market modern treatments for valley fever. * Raise enough money to finish the work of creating a vaccine.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
We mined state hospitalization data to show the costs of treating — and not treating — valley fever; patient records to chronicle the suffering; state prison medical reports to show the cost of treating vulnerable prison inmates; medical journals and studies to learn about the disease, research into it and treatments; and public health databases to compare the impacts to those of other illnesses. We had to file public records requests with the state Victim Compensation and Government Claims Board and city of Bakersfield workers compensation officials to help tally up the taxpayer costs of not adequately preventing and treating valley fever. We tapped myriad websites to find experts, download databases, reach out to patient advocacy groups and explore available research and reports.
Explain types of human sources used.
We interviewed dozens of valley fever sufferers plus many, many doctors, medical researchers, scientists, government health policymakers, state and federal lawmakers, patient advocacy groups and even veterinarians treating animals with valley fever.
Results:
Valley fever patients and their families packed a town hall meeting of lawmakers and medical experts in Bakersfield in October, demanding a new approach to funding research and treatment. The state senator who called the meeting responded by promising new legislation to speed up progress on finding a vaccine for the disease. The Centers for Disease Control and Prevention contacted the Collaborative and asked it to help educate the public about valley fever by creating a webpage mostly populated by our stories. U.S. House Majority Whip Kevin McCarthy, who is from valley fever-endemic Bakersfield, requested an in-person meeting with the CDC director about how the agency planned to fight the scourge.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No one has challenged the accuracy of any of our work, and we have not run any corrections.
Advice to other journalists planning a similar story or project.
We have several tips for journalists examining overlooked diseases that disproportionately impact their communities. California lacks a robust surveillance system to track valley fever, and the Centers for Disease Control and Prevention stopped gathering data about deaths from the disease in 2007. Without this official data, it was difficult to describe trends in the disease. We highlighted this lack of government attention. Reporters should look for the most comprehensive data available about disease trends. If that data does not exist, point it out. That’s a story in itself. We revealed that valley fever poses significant costs to patients, taxpayers and the health care system. To illustrate this, we pushed state officials to provide us with detailed information on hospitalization costs due to valley fever, and requested workers’ compensation records from cities and counties. We also told patients’ personal stories, through their own recollections and medical records. We recommend that reporters strive to detail the costs of a disease, using a combination of public records and verified personal stories. Even in areas where valley fever is endemic, doctors regularly misdiagnose valley fever, delaying treatment and prolonging suffering. We told the story of one young patient who was misdiagnosed, without bordering on melodrama. Reporters should use human stories to underscore key reporting findings, like the high rate of misdiagnosis of a disease, and to reveal how the health system could operate more effectively. Valley fever takes a heavy toll on inmates incarcerated in prisons in the Central Valley. We told the personal stories of inmates who felt they had been doubly punished – with a prison sentence and a lifelong disease – and described the extent of the disease throughout the prison system. When reporting on diseases in prisons, reporters should map the problem, while keeping in mind that readers generally have little sympathy for inmates. Prisons are their own worlds, so reporters should expect difficulties, and work around legal issues. The final story in our series offered an action plan to move the needle on valley fever. To spur movement on an issue, reporters should encourage sources to offer solutions, and to commit to a timeline for change. They should also describe other successes that can serve as models.