Valley fever hits the minority population in the Southwest the hardest

TUCSON – Daniel Sestiaga remembers being in a hospital COVID-19 unit in late 2020. He tested positive for the virus that causes COVID-19 in June and later tested negative, but he still struggled to breathe and tested positive again by late August.

After driving 60 miles to visit his doctor at Indian Health Services in Sells, Sestiaga said his doctor took a chest X-ray that showed pneumonia. His breathing became so difficult that he had to go to the emergency room before seeing a pulmonologist.

It wasn’t just COVID-19 that caused his breathing difficulties. He was diagnosed with valley fever after an X-ray showed fluid around his lungs, limiting their capacity. Sestiaga was told the fluid needed to be removed.

Emergency room doctors who cleared his lungs told him that he would feel a lot of pressure and that he would have to keep breathing throughout the process. The capacity of his right lung was half normal size.

“Suddenly my lungs started working,” Sestiaga said. “I felt like I was breathing for the first time. Then they put me at the drain.”

Doctors eventually drained between 2 and 4 liters of fluid from his lungs, he said. He felt enormous pressure.

Valley fever (Coccidioidomycosis) is an infection caused by the spores of Coccidioides fungus, according to the Centers for Disease Control and Prevention. The spores live in the soil and dust in some parts of the southwestern US. People become infected by inhaling the spores as they are released from the dust.

When they tested Sestiaga, they noticed that his markers for Coccidioides infection “were through the roof,” he said.

Early testing can prevent many of the problems associated with disease progression, said Dr. Robert Johns, medical director of Banner Urgent Care. Johns recalled one person experiencing serious complications after not being tested quickly enough.

“This person who was diagnosed with pneumonia in the ER and given an antibiotic actually had valley fever,” Johns said. “He was hospitalized in the ICU. He was put on a ventilator and eventually had a pneumonectomy, where part of the lung was removed.”

Because of increased awareness of the disease, anyone who comes to Banner Urgent Care with pneumonia should get a valley fever test, Johns said. Sometimes the disease also causes a telltale rash called erythema nodosum, which may warrant a quick test.

“First of all, it won’t go away with antibiotics. Second, it’s more than likely it’s going to get worse,” Johns said.

Still, tests are typically not sensitive in the early course of the disease, said Dr. John Galgiani, director of the Valley Fever Center for Excellence at the University of Arizona.

“It is a very specific test. If the result is positive, even with a single test, you don’t have to wait for a few,” Galgiani said. “Unfortunately, they are not completely sensitive, so sometimes they are negative at the beginning of these tests. If you repeat it two weeks later, it becomes positive.”

The tests also often have to be sent to an outside laboratory — in-clinic testing is not yet common — which can lead to delays that hinder treatment, Galgiani said.

“That delay is actually a barrier to getting the test done at all, because it seems like the test will take a long time, too long to really be a problem,” Galgiani said.

According to the CDC, the true number of valley fever cases is likely underreported because many patients are not tested. The Valley Fever Center for Excellence estimates that the actual number of cases is six to 14 times higher than reported.

The fungus is found throughout the Southwest and, according to the Arizona Department of Health Services, Arizona is responsible for nearly two-thirds of all cases of Valley Fever in the US.

According to the Arizona Department of Health Services, between 1990 and 2022, reported cases of Valley Fever increased from 5.2 per 100,000 people to 128.4 per 100,000 people. Arizona’s three most populous counties alone – Pima, Maricopa and Pinal – accounted for 94.1% of the state’s Valley Fever cases.

Additionally, Valley Fever is one of the most commonly reported infectious diseases in Arizona. In 2022, there were 706 hospitalizations associated with a primary diagnosis of Valley Fever, and hospital costs for Valley Fever patients totaled $68.3 million, according to the Arizona Department of Health Services.

“It’s kind of like an Arizona disease now because of the population growth in the state. While the name originally came from California,” Galgiani said. “95% of infections occur between those states.”

Although Arizona has the highest numbers of patients with the disease, the fungus that causes Valley Fever can be found across the Americas, from Mexico to Argentina, Galgiani said.

Most people recover from the disease without medical care, and about 60% of people experience no symptoms. But in some cases, the infection spreads throughout the body, known as dissemination, according to an article in the Journal of Fungi. Of the 150,000 estimated infections in the US, approximately one-third require clinical attention.

According to several health sources, the main symptoms of an acute infection are fever, cough, shortness of breath and rash. Symptoms of chronic infection include coughing up blood, low-grade fever, weight loss, chest pain, and nodules in the lungs.

In severe cases of spread, the fungus can cause severe nodules or lesions that are worse than initially present; painful lesions in the skull; painful, swollen joints; and meningitis, according to several health sources.

Anyone can contract the disease, but the infection varies between races and ethnicities. In Arizona, Hispanic, Native American and black people are more likely to develop severe Valley Fever than white people.

A study, reported in a 2019 article in the journal Open Forum Infectious Diseases, looked at the disease among American Indians/Native Alaskans from 2001 to 2014 and found they had high rates of hospitalization, high morbidity and possible missed opportunities for an earlier diagnosis. The study concluded that Native Americans “may be particularly vulnerable” to Valley Fever.

Sestiaga is a member of the Fort Yuma Quechan Tribe.

“A lot of native people had let me know, ‘Well, I had a cousin who died, and I had an uncle who died,’ and later they found out it was Valley Fever,” Sestiaga said.

Before being diagnosed with the disease, Sestiaga said he wasn’t even aware of Valley Fever. Despite advances in testing, there is still a lack of awareness about its testing in pneumonia cases, Johns said. There is also a lack of knowledge for doctors trained in countries where the disease is not endemic, especially on the east coast.

“I had to take a crash course in Valley fever. ‘What is it?’ What is happening?’ I had recently gotten my master’s in public health from the U of A, but Valley Fever never came up in the conversation. I never even knew what Valley Fever was,” Sestiaga said.

Valley fever is treated with azole antifungals, such as fluconazole. If treatment is stopped, a relapse of the infection may occur, according to the Journal of Fungi. Galgiani said there is no vaccine yet, but there is an effort to start human trials as early as this year.

“I will probably be on low-dose fluconazole for the rest of my life,” Sestiaga said.

Some of the side effects of fluconazole include loosening or peeling of the skin, hair loss, chest pain, muscle pain and cramps, and unusual bleeding or bruising, according to several health care providers.

“I couldn’t even complete one lap because they had to deploy the IV. They had to fill you with a whole bag of saline (and) fluid because it’s so hard on your kidneys,” Sestiaga said. He was given a cocktail of drugs at the hospital, including fluconazole and amphotericin, he said.

Galgiani said part of the reason funding to find a vaccine has been slow is because Valley fever is an “orphan disease,” defined by the Food and Drug Administration as one that affects fewer than 200,000 people. So far, the only tools to combat Valley Fever are education on how to prevent the disease and antifungal treatments.

Research can also suffer from a lack of willing participants. Sestiaga only enrolled in medical trials that focused on valley fever and nothing else. His caution came from knowing the history of mistreatment of Indigenous people in medical settings.

In 2004, the Havasupai Tribe sued the Arizona Board of Regents and Arizona State University when tribal members discovered that DNA samples taken for research into type 2 diabetes had also been used in other genetic studies without their consent.

According to the American Medical Association Journal of Ethics, researchers violated the tribe’s informed consent by testing their genetic material for inbreeding, schizophrenia, alcoholism and the origins of the tribe’s migration from Asia.

“Culturally, I’m not supposed to give you my blood, that’s just what we were taught,” Sestiaga said.

It is also difficult to measure valley fever infections in people who work outside the home. Any activity that involves digging, disturbing soil or generating dust in places where the Coccidioides fungus grows puts workers at risk for infection, according to the Occupational Safety and Health Administration.

Valley fever is not covered by workers’ compensation in Arizona, according to the Industrial Commission in Tucson. More than a third of Arizona construction workers lack health insurance, nearly three times the rate of all workers, according to the University of California Labor Center at Berkeley.

Even with insurance, good treatment is no guarantee.

“I had the opportunity to have the coverage … to obviously be able to cover the treatment and everything,” Sesitaga said. “But that is not without problems.”