A Disease Without a Cure Spreads Quietly in the West; Valley fever has been labeled “a silent epidemic,” with over 20,000 cases reported each year, but each case is different, and doctors have yet to find a cure

July 4, 2013

A Disease Without a Cure Spreads Quietly in the West

By PATRICIA LEIGH BROWN

BAKERSFIELD, Calif. — In 36 years with the Los Angeles police, Sgt. Irwin Klorman faced many dangerous situations, including one routine call that ended with Uzi fire and a bullet-riddled body sprawled on the living room floor.

But his most life-threatening encounter has been with coccidioidomycosis, or valley fever, for which he is being treated here. Coccidioidomycosis, known as “cocci,” is an insidious airborne fungal disease in which microscopic spores in the soil take flight on the wind or even a mild breeze to lodge in the moist habitat of the lungs and, in the most extreme instances, spread to the bones, the skin, the eyes or, in Mr. Klorman’s case, the brain.The infection, which the Centers for Disease Control and Prevention has labeled “a silent epidemic,” is striking more people each year, with more than 20,000 reported cases annually throughout the Southwest, especially in California and Arizona. Although most people exposed to the fungus do not fall ill, about 160 die from it each year, with thousands more facing years of disability and surgery. About 9 percent of those infected will contract pneumonia and 1 percent will experience serious complications beyond the lungs.

The disease is named for the San Joaquin Valley, a cocci hot spot, where the same soil that produces the state’s agricultural bounty can turn traitorous. The “silent epidemic” became less silent last week when a federal judge ordered the state to transfer about 2,600 vulnerable inmates — including some with H.I.V. — out of two of the valley’s eight state prisons, about 90 miles north of here. In 2011, those prisons, Avenal and Pleasant Valley, produced 535 of the 640 reported inmate cocci cases, and throughout the system, yearly costs for hospitalization for cocci exceed $23 million.

The transfer, affecting about a third of the two prisons’ combined population, is to be completed in 90 days, a challenge to a prison system already contending with a federal mandate to reduce overcrowding. Jose Antonio Diaz, 44, who has diabetes and was recently relocated to Avenal, is feeling “very scared of catching it,” said his wife, Suzanne Moreno.

Advocates for prisoners have criticized state agencies for not moving the inmates sooner. “If this were a factory, a public university or a hotel — anything except a prison — they would shut these two places down,” said Donald Specter, the executive director of the Prison Law Office, which provides free legal assistance to inmates.

The pending transfer has underscored the complexities and mysteries of a disease that continues to baffle physicians and scientists. In Arizona, a study from the Department of Health Services showed a 25 percent risk of African-Americans with newly diagnosed valley fever developing complications, compared with 6 percent of whites.

“The working hypothesis has to do with genetic susceptibility, probably the interrelationships of genes involved in the immune system,” said Dr. John N. Galgiani, a professor at the University of Arizona and the director of the Valley Fever Center for Excellence, founded in 1996. “But which ones? We’re clueless.”

Kandis Watson, whose son Kaden, 8, almost died, had a gut feeling that “something was not right,” she said, when Kaden began feeling sick two years ago. The pediatrician prescribed antibiotics, but Kaden’s health deteriorated, with a golf ball-size mass developing at the base of his neck. The infection enveloped Kaden’s chest, narrowing his trachea.

Kaden was essentially breathing through an opening the size of a straw, said Dr. James M. McCarty, the medical director of pediatric infectious diseases at Children’s Hospital Central California in Madera, where Kaden spent six months. Today the boy is back to his mischievous self, surreptitiously placing a green plastic lizard in his mother’s hair.

But how he contracted valley fever is still guesswork. “I think he got it being a boy, digging in the dirt,” Mrs. Watson said.

Kern County, where Bakersfield is located, had more than 1,800 reported cases last year. At Kern Medical Center, Dr. Royce H. Johnson and his colleagues have a roster of nearly 2,000 patients. Many, like Mr. Klorman, have life-threatening cocci meningitis.

“I got a bad break,” said Mr. Klorman, who is known as Joe. Until illness forced his retirement, he preferred a squad car to a desk job. Now he travels four hours round trip three times a week so Dr. Johnson can inject a powerful antifungal drug into his spinal fluid. In other patients, the disease has been known to eat away ribs and vertebrae.

“It destroys lives,” said Dr. Johnson, whose daughter contracted a mild form. “Divorces, lost jobs and bankruptcy are incredibly common, not to mention psychological dislocation.”

Once athletic, Deandre Zillendor, 38, dropped to 145 pounds from 220 in two weeks, and lesions erupted on his face and body. “You keep it forever, like luggage,” he said of the disease.

Todd Schaefer, 48, who produces award-winning pinot noirs in Paso Robles, was told by his doctors that he had 10 years to live. That was 10 years ago. But valley fever has disseminated into his spinal column and brain, and his conversation is interrupted by grimaces of pain. Ruggedly handsome, he still outwardly resembles the archetype of the California good life. But Mr. Schaefer has had a stroke, a hole in his lung, two serious heart episodes and relapses that “put me on the edge of life,” he said.

He believes he got infected with valley fever atop a tractor during the construction of Pacific Coast Vineyards, which he runs with his wife, Tammy. One doctor initially suggested bed rest, chicken soup and cranberry juice.

Today Mr. Schaefer can no longer can drink wine, and he begins every morning retching. “I told her to leave me,” he said at one low point, of his wife, who is 37. “She’s too young, too beautiful.”

Dr. Benjamin Park, a medical officer with the C.D.C., said that the numbers of cases are “under-estimates” because some states do not require public reporting. They include Texas, where valley fever is endemic along the Rio Grande. In New Mexico, a 2010 survey of doctors and clinics by the state’s public health department revealed that 69 percent of clinicians did not consider it in patients with respiratory problems.

Numbers spike when rainfall is followed by dry spells. Many scientists believe that the uptick in infections is related to changing climate patterns. Kenneth K. Komatsu, the state epidemiologist for Arizona, where 13,000 cases were reported last year, said that another factor may be urban sprawl: “digging up rural areas where valley fever is growing in the soil,” he said.

In Avenal, citizens have become activists, looking into possible environmental factors, including a regional landfill that accepts construction waste. Three of the four children of James McGee, a teacher, have contracted the disease, including Marivi, 17, who was found convulsing in the ladies’ room at school. Dr. McCarty of Children’s Hospital is seeing an increasing number of children from Avenal.

Valley fever was a familiar presence during the Dust Bowl, and in Japanese internment camps throughout the arid West. Yet there is still no cure, and research on a fungicide and a potential vaccine have been stalled by financing issues. One company, Nielsen Biosciences Inc., has developed a skin test to identify cocci but has not yet been able to make it financially viable.

Part of the difficulty is that cocci is “a hundred different diseases,” Dr. Johnson said, depending on where in the body it nests. His patients include farm workers, oil field workers and construction workers.

One of his patients, Barbara Ludy, 61, had a job that involved taking care of a man who is quadriplegic. She was strong enough to lift his 175-pound frame, plus his wheelchair, into a van. Cocci meningitis affected her ability to think, to remember, to walk, to live independently. When her weight dropped to 71 pounds, her distraught daughters went to Goodwill to buy their mother size zero clothes.

One daughter, Jennifer Gillet, now takes care of her mother full time. Ms. Ludy is recuperating, slowly. And things are looking up: She is now a size 10.