Valley fever diagnoses delayed by lack of local medical resources, knowledge

Jul. 24—Amanda Barbosa saw the first signs that something was wrong with her husband, Gemini, on a Wednesday evening when he called her coughing and saying he wasn't feeling well.

A week later, he was diagnosed with bronchitis and a spot of pneumonia on his lung. He was prescribed an antibiotic, but it didn't work.

On Sunday morning, he collapsed. In the afternoon, he was intubated, but eventually, Barbosa was assured she could go home and rest. The hospital staff told her they were only concerned with his kidney. With a newborn daughter to consider, Barbosa agreed.

"About 10 o'clock at night they told me to go home," Barbosa said. "I went home. At 3 in the morning, they called and said: 'You need to get down here — it's iffy.'"

He was dead before noon. The official cause of death was listed as a heart attack, but on looking at her husband's charts, Barbosa found that he'd tested positive for cocciodioides, the fungus that causes Valley fever. Before that, she said she knew nothing about what the fungus was or what it did. Now, she's convinced that's what killed him.

Those who fight and are afflicted by Valley fever say this is often the case — that it takes a loved one contracting the illness to become aware. Barbosa lost her husband in 2006 and in recent years, efforts have been made to raise awareness. But a lack of local doctors trained in treating the illness has resulted in delayed diagnoses, sometimes when it's in advanced and life-threatening stages, said those who've experienced it in their lives and the lives of their families.

Out-of-town doctors, local sickness

Cocciodioides (often shortened to "cocci") is found predominantly in the southwestern United States and Mexico, with the most prevalent clusters located in Arizona and the San Joaquin Valley. It tends to thrive in drier, dustier climates, with the worst outbreaks occurring during periods of relief at the end of a drought cycle.

The majority of people who breathe in the spores will be asymptomatic, while those who do become sick often suffer from a respiratory illness. But in some, rare cases, the cocci disseminates outside the lungs to other parts of the body, like the liver, the joints, the spine, or the brain. Early detection is crucial to avoiding debilitating or even fatal results.

There are about 10,000 cases of Valley fever reported every year nationwide according to the Centers for Disease Control (CDC), a relatively small number compared to other illnesses like cancer or COVID-19, which has dominated the medical discussion over the last year.

Physicians, patients and their loved ones say this has resulted in a lack of understanding and awareness, even among physicians.

"A huge number of the doctors in California trained somewhere else," said Dr. Royce Johnson, medical director for the Valley Fever Institute at Kern Medical in Bakersfield. "A lot of people come here and Valley fever was a paragraph that they heard in their sophomore year and they never heard about it again."

Johnson added that in the case of small health providers like urgent care clinics, the bill for testing is often passed not to the insurance company, but to the clinic. And even if testing is done, that's no guarantee that the infection be caught.

About the Series

August is Valley Fever Awareness Month, and the Hanford Sentinel is publishing a two-part series on its impact in our region, and the lack of local medical resources to help those stricken with the fungal infection. Coming next Saturday: Blacks, Filipinos more susceptible to Valley fever dissemination. Find the story in your print newspaper, and online at hanfordsentinel.com.

"A lot of the testing that's done isn't good. And furthermore, even if you have a good test, if you develop symptoms in the last four days, the odds of that test being negative when you actually have Valley fever, are probably 50%," Johnson said.

Former Hanford Mayor Sue Sorensen said that's why the infection is not well known outside of the San Joaquin Valley.

"Because we have so many doctors that come here now who aren't from here, the training isn't in the medical system," she said.

Sorensen said she lost her mother, Patricia Matts, in 2004 to Valley fever that she picked up in Arizona. A spinal tap found meningitis, which was the result of the cocci spreading to the brain.

But since bacterial or even viral meningitis would have killed Matts at that point, Sorensen said the doctor she went to in Fresno didn't think to check for fungal meningitis and dismissed the finding. By the time medical personnel determined it was Valley fever, it was too late.

Hanford Joint Union High School District Trustee Paula Massey added that such lack of awareness also plays adversely into Valley fever treatment. Her oldest son, Jeffrey Hamilton, died from it in 2017 while her youngest son, Theodore, is now living with it.

"You have to be on medication for a lifetime. My second son who had it, the doctor ... for some strange, crazy reason because his numbers were low, took him off the medication," Massey said. "Then his numbers got high and he was so sick. Why would you take him off his medication? Once again, they don't know."

Improvements made, needed

Rob Purdie, the patient/program development coordinator for the Valley Fever Institute, says their organization has been at the forefront of training and helping others understand the threat.

"In Kern County, we have spent a lot of time and effort at Kern Medical and other entities, public health and other entities in this community educating physicians about Valley Fever," Purdie said. "There's a long history of education on those efforts in Kern County, probably more so than anywhere else."

Kern Medical has worked with other healthcare entities in the Valley to help provide training and conduct research. However Purdie, himself a patient with disseminated Valley fever in his brain, cautioned that there's always more that can be done.

"If you and I went out to Pismo and about 50 yards offshore we sat on a surfboard and started talking about the movie 'Jaws,' you'd probably suck your toes up out of the water and put them up on the surfboard," Purdie said. "But talking about it here where it's dry and there's no water around, it doesn't matter — we can talk about 'Jaws' all day."

Valley fever, Purdie said, is in many ways similar. When a person is healthy, they don't think about Valley fever, or other illnesses. In many cases, it takes having a loved one suffer from the illness before they even consider the possibility that they may have it.

This was the case for Sorensen, who recently had a scare when she had symptoms similar to her mother's.

"Just a few weeks ago, I had all these symptoms. I had been in Quartzsite, Arizona, which is where my mom got it and about three weeks later, I had every symptom of Valley fever — the night sweats, the achy joints, the little bit of a cough, extremely tired."

When Sorensen went into the doctor's office, she asked to be tested, but says the medical professional she was seeing didn't know what Valley fever was, stating that he was from somewhere outside the area.

Johnson said it's not uncommon for doctors to dismiss Valley fever as a possible cause of sickness.

"When somebody walks in here and says — and I've had patients tell me this — 'Maybe I should be tested for Valley fever,' they say: 'Oh no, it couldn't be that,'" Johnson said. "Because they have no idea what the frequency of the disease is. So yes, I've heard lots of stories like that and it is a shame because there could be a missed opportunity."

Fever in the time of COVID

Efforts to educate the public on the dangers of Valley fever have been, and are being made.

In 2019, California State Assemblyman Rudy Salas (D-Bakersfield) pushed through AB-203, enabling Cal-OSHA to require and enforce the provision of education to construction companies (and other outdoor-related businesses) about protection from Valley fever in hotspot areas. Those include places like Fresno, Kings and Kern counties. The legislation took effect in May of 2020, however, right as COVID-19 was escalating.

According to Johnson, the medical discussion has been dominated by the pandemic the past year, with cocci being sidelined in the public's mind.

"When you're in the middle of a historic pandemic, every other disease is taking a back seat, including heart disease, stroke, cancer ... they're all taking a backseat to COVID," Johnson said. "COVID has definitely shoved every other disease to the side and that's probably appropriate in the sense that it's the great unknown."