Rick Parker knew he had valley fever, but his doctors wouldn’t test him.
The 48-year-old was prospecting gold in Mojave, California, in 2013 when he inhaled some dirt. Not long after, he became fatigued, developed a cough, had lung pain and experienced chills.
The Phoenix native had heard all about valley fever while living in Arizona, where the disease infects thousands annually. But when he asked his doctors in Torrance, California, to test him, they refused.
Emergency room doctors at Torrance Memorial Medical Center told him that nobody in Los Angeles develops valley fever and diagnosed him with tuberculosis.
Then his general practitioner said he had pneumonia, then tuberculosis again. Parker said she was about to begin treating him for lung cancer when he locked himself in her office and demanded that she test him for valley fever.
“I knew what I had, and I wasn’t going to put up with a lung cancer misdiagnosis and have them remove a lung for no reason whatsoever,” Parker said.
After his tests came back positive, his general practitioner called to apologize, he said, and admitted he was her first valley fever patient.
“It’s frustrating, and it’s even more frustrating when you know what you have and nobody will listen,” Parker said.
Parker faced one of the most challenging aspects of valley fever: a lack of awareness among physicians, the very people whom patients tend to trust the most.
Valley fever, or coccidioidomycosis, is caused when fungal spores common in the southwestern United States get released into the air and inhaled.
Most people don’t develop symptoms, but others come down with a fever, cough, extreme fatigue and a rash, among other symptoms. In rare cases, the fungal spore can spread to the bloodstream, infect other organs, and cause cocci meningitis, leading to a lifetime of health issues and potentially to death.
Cases have spiked recently, with infections in California last year reaching the highest number ever recorded. More than 6,100 cases were reported in Arizona in 2016, including 57 deaths.
All local doctors in California’s Central Valley and Arizona’s valley fever corridor, through Maricopa, Pinal and Pima counties, should recognize valley fever symptoms, public health officials say.
But that’s challenging in a medically underserved region known for having a revolving door of new doctors. Once those doctors begin to understand the disease and become good at diagnosing it, they often relocate for new career opportunities, public health officials say.
Despite the high infection rate in Kern County, California, and throughout Arizona, there’s no mandate that all new doctors undergo training on valley fever and how to diagnose it.
There are no agreed-upon best practices for raising awareness among doctors. And it’s unclear whether medical professionals even know when valley fever cases are surging because counties have no uniform guidelines for when to declare an epidemic and are not equipped to disseminate the message effectively.
House Majority Leader Kevin McCarthy, who formed a Congressional Valley Fever Task Force in 2013, said in an August interview that educating doctors in areas where the disease is endemic could lead to the greatest improvement in reducing the toll.
When asked whether he would push for legislation that would mandate training for doctors new to areas where valley fever is endemic, he instead urged insurers to put pressure on health plans. Insurance networks, McCarthy said, need to do more to educate their doctors.
Health Net and Blue Shield in California, which insure roughly two-thirds of the Kern County market, did not respond to repeated requests for comment.
Kaiser Permanente declined to comment, providing a prepared statement affirming its commitment to continuing physician education on relevant clinical issues, including infectious diseases such as valley fever.
None of the four major Arizona health insurance companies contacted for this story — Humana, Health Net, UnitedHealthcare or Blue Cross Blue Shield of Arizona — said they are not promoting valley fever awareness at the moment.
“We frequently communicate health and wellness information to our member and provider community, and valley fever has been a topic in the past,” Blue Cross Blue Shield of Arizona spokeswoman Anne Christenson wrote in an email. “We have not, however, communicated anything on the topic of valley fever recently.”
Repetition is key
Dr. John Galgiani, director of the University of Arizona’s Valley Fever Center for Excellence, recommends going further, with regular briefings for doctors in endemic areas.
“Going to a course sounds good, but that information gets catalogued in the backs of doctors’ minds and doesn’t necessarily come bubbling up to the surface if the next patient in their clinic has valley fever,” he said.
Repetition is key, as is engaging doctors in their workplaces, Galgiani said.
“Changing practices requires constant and repetitive attention to staying on message and telling people this is important,” Galgiani said.
One solution could be if the Arizona Medical Board created a continuing medical education course on valley fever that’s mandatory for licensed physicians on a periodic basis, suggested Will Humble, who is executive director of the Arizona Public Health Association.
But the Arizona Medical Board does not mandate any continuing medical education, though it is currently involved in a rulemaking process to require mandatory education in opioid prescribing, executive director Patricia McSorley said.
Right now, Arizona physicians may choose continuing education topics that are “most valuable to the individual physician to remain current in medical practice,” and well informed in medical advancements, McSorley said.
One way that Galgiani is hoping will effect better physician knowledge is through an effort to alter protocol within Banner Health.
Galgiani is trying to create change through a Banner-wide process called Clinical Consensus Groups, where system changes in protocol happen through consensus-building.
The protocol he’s proposing follows a “COCCI” algorithm — Consider the diagnosis; Order the right tests; Check for risk factors; Check for complications; Initiate management.
“It doesn’t get done overnight,” Galgiani said. “The reason I’m working with Banner is that I’m in Banner. It’s the tools I have to work with.”
Under the proposed protocol, patients who are diagnosed with pneumonia and prescribed medicine by their doctor, whether a primary care doctor or a specialist, would get a valley fever test.
People with valley fever who get treated for pneumonia with antibiotics, for example, could end up just getting sicker and sicker. The treatment for valley fever is typically an anti-fungal drug and antibiotics won’t help.
Galgiani views the effort as a pilot “population health management” approach that could be used in the future for other diseases.
He would like the change through Banner to happen within the year, but the process has just begun.
If Banner does end up adding valley-fever tests as a best practice for certain patients, other health systems could take notice and that’s how Galgiani expects real change will occur.
Banner Health is a Phoenix-based nonprofit health system with 28 medical centers in six states which has an academic affiliation with the UA.
The UA Valley Fever Center for Excellence printed 7,000 information books about valley fever for physicians in 2015 and has since done a second printing. But distributing those booklets is “paltry” compared with the possibility of more systemic change, Galgiani said.
In May 2015 the Arizona Medical Association passed a resolution to use its resources to promote valley fever visibility, “its importance as a public health problem in Arizona, and how its members could improve their clinical practices to the benefit.”
The resolution called for allying with the Arizona Osteopathic Medical Association, the Arizona Lung Association and other groups to “jointly take a public position that coccidioidomycosis is an important public health issue.”
Since then, the Arizona Medical Association has posted information about valley fever, including physician education opportunities, on its website, and in its magazine, and held a stakeholder meeting in October 2015, said Sharla Hooper, associate vice president of communications for the association.
Most of the American Lung Association’s work in Arizona is directed at COPD (chronic obstructive pulmonary disease), asthma, and lung cancer, though the association has information about valley fever on its website, including key facts and questions to ask your doctor, marketing and communications director Heather Mangan said.
In addition, the association recently did a blog post about the relationship between valley fever and climate change. Also, its Lung HelpLine (1-800-LUNGUSA) is staffed by lung experts who will answer questions about lung diseases, including valley fever, Mangan said.
Since 2015, the Arizona Osteopathic Medical Association participated in a joint meeting on valley fever with the Arizona Medical Association and the UA, executive director Peter Wertheim said.
“We have hosted continuing medical education lectures at our conferences and have a program available online,” he wrote in an email.
Hooper says a current project she is working on, for physicians new to Arizona, will feature a public health appendix and information about valley fever and other public health issues specific to Arizona.
“We are strongly supportive of efforts to educate physicians and all health care providers of valley fever, as it is a disease and public health concern very specific to our region and environment,” she said.
Bill Fearneyhough, executive director of the Pima County Medical Society, says as far as he knows, local doctors “know everything about valley fever,” particularly since the UA Valley Fever Center for Excellence is in Tucson.
“The information is out there. If you move to Southern Arizona you’ve got to be aware of valley fever,” he said. “This topic has come up so many times in educational programs. ... Maybe I’m just jaded but it seems like this thing never goes away.”
But Galgiani says published data by the Arizona Department of Health Services indicates practical physician knowledge about valley fever remains a problem. In a 2007 survey of Arizona health providers, 21 percent of respondents correctly answered all four valley-fever treatment questions. And new doctors who weren’t trained in Arizona continue to be licensed here, Galgiani said.
The fact that Fearneyhough believes awareness is not an issue, he said, “is a symptom of the problem.”