Chagas' disease can cast a silent, lifelong shadow

The cryptic letter arrived a few weeks after Maira Gutierrez donated blood for the first time in 1997. The Red Cross had rejected her blood. It listed a phone number to call.

Gutierrez left a message, then waited three agonizing days for a reply, fearing she had HIV. The truth proved more confusing than reassuring: She had something called Chagas' disease, an ailment she'd never heard of, spread by a winged insect incongruously dubbed the "kissing bug."

A Red Cross pamphlet told her the parasitic affliction could be fatal — it could stop her heart. But doctors she consulted didn't know how to help her or treat the disease.

Photos: Chagas' disease

Physically, Gutierrez felt fine. After months of stress and unanswered questions, she decided to try to move on. But for more than a decade, the heavy knowledge that she carried a potentially deadly parasite hung over her.

Then, late one evening in 2008, her sister phoned, frantic. Chagas' disease was on the news.

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Chagas affects an estimated 300,000 people in this country and about 13 million worldwide, chiefly in Latin America, where it is a leading cause of heart failure.

Most carriers in the United States are immigrants who acquired the disease in impoverished areas of Bolivia, Mexico or Central America, where kissing bugs inhabit the cracks and crannies of homes. The bugs nip at faces and lips while people sleep, and drop feces laden with the parasite Trypanosoma cruzi. The parasite can enter the open wound and circulate in the blood, attacking the heart, colon or esophagus.

No one is predicting an epidemic in this country, but disease experts are trying to increase awareness, testing and treatment of Chagas, which can affect sizable swaths of the population, particularly in states like California, with a large Latin American immigrant population.

The effort is needed because the disease can linger undetected for decades, making it difficult to diagnose. Symptoms can be as subtle as an irregular heartbeat or shortness of breath.

Two-thirds of those who become infected never develop complications. But for about 30% of those who contract Chagas' disease, it can cause serious illness, often silently ravaging the heart muscle. Most American physicians don't think to test for it, potentially denying life-saving treatment to thousands.

The disease can trigger strokes and heart failure in people as young as 30. "Your heart just turns into a big, ineffective bag," said cardiologist Sheba Meymandi, director of a Chagas treatment program at Olive View-UCLA Medical Center, the only one of its kind in the nation. About 1 in 100 Latin American immigrants whom the center tests has the disease.

Insects carrying the parasite live throughout the southern half of the U.S. But there have been only nine confirmed cases of people contracting the disease from insects in this country since 1955.

Still, says Meymandi, "This is not an exotic disease. This is a prevalent disease that is treatable in our community. And until people think about it, we're not going to make inroads."

Kissing bugs are suspected of having infected two Los Angeles high school students recently. Meymandi treated the 17-year-olds, who tested positive for Chagas after donating at school blood drives. Neither is of Latin American descent or has ever traveled to the region. But both spend time outdoors mountain biking or golfing, and Meymandi thinks they acquired the disease locally.

Los Angeles County currently has no Chagas public education program, but officials say they might create one if there are increased signs that the disease is being contracted locally.

The federal Centers for Disease Control offers free drugs to treat Chagas. But they receive just 50 or 60 requests a year for the medications, suggesting that thousands of cases go untreated. "Most healthcare providers don't think of Chagas' disease when they see someone who might be at risk," said Susan Montgomery, a CDC epidemiologist.

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Gutierrez, 39, of Mission Hills grew up in the small mountain village of El Congo, El Salvador, with no running water or electricity. She lived with her grandmother until age 8, then immigrated to Lynwood with her younger sister to join her parents, who had already fled their homeland's civil war.

Working as an administrative assistant at Universal Studios introduced Gutierrez to the man who became her husband, Daniel, who works there as a landscaper. It was also through her job that she learned of Chagas. She tested positive for the disease during a random screening after a 1997 workplace blood drive.

The Red Cross brochure that Gutierrez received explained that kissing bugs spread the disease in places of extreme poverty, hiding in thatched roofs and cracked walls. Looking at the brochure's photos, Gutierrez flashed back to El Congo: "Oh, my God, that's exactly where I lived."

Her doctor referred her to a specialist, who told her Chagas was untreatable, Gutierrez said. She was confused and angry — no one could tell her what to do. Eventually, she stopped asking.

For the next decade, Chagas crossed her mind whenever her health flagged, when her daughter was born two months early, when delivering her son required a lengthy recovery.

After her sister called about the Chagas news story in 2008, Gutierrez learned of the Olive View Center and contacted Meymandi. The doctor performed heart tests and started Gutierrez on an anti-parasitic drug. She took the pills three times a day for three months, a grueling regimen that sapped her appetite. She lost 20 pounds.

As with nearly everyone who undergoes treatment, she wasn't cured, but her parasite count and the risks of serious complications were greatly reduced.

After her treatment, Gutierrez began speaking at medical conferences about Chagas from a patient's perspective. "People think it's not here," she said.

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Experts agree that Chagas needs more attention, but a recent editorial in the Public Library of Science's journal Neglected Tropical Diseases sparked controversy by labeling Chagas "the new HIV/AIDS of the Americas." Peter Hotez, the paper's lead author and dean of the National School of Tropical Medicine in Houston, noted that both are chronic diseases spread by blood, require toxic medications and disproportionately affect the poor.

But Chagas is not a virus and cannot be sexually transmitted. And there is little patient advocacy to draw attention and funding to the illness. "This is a forgotten disease among forgotten people," Hotez said.

Caryn Bern, a visiting global health expert at UC San Francisco, said the comparison to HIV is overblown and sensational. And Meymandi worries that the association will create additional stigma for immigrants with Chagas.

In the southern U.S., kissing bugs carrying the parasite can infect raccoons, dogs and, on occasion, people. The blood-borne disease also passes from mother to child in utero 5% to 10% of the time.

Since 2007, the American Red Cross has screened all new blood donors for Chagas. Unlike Gutierrez, donors who test positive today receive disease information and treatment guidance from the outset. But the Red Cross has found that most do not check in with a doctor as instructed.

A more effective approach, Meymandi says, is working with promotoras — trusted Latin American community members who provide health education through churches and schools. They also organize neighborhood health fairs, where Meymandi and her staff collect blood samples for Chagas testing. Attendees who test positive almost always come in for treatment, Meymandi said.

At a recent fair at Emmanuel Covenant Church in Northridge, several dozen people advanced through rows of wooden chairs, fanning themselves with health brochures. Mara Barajas of Pacoima sat at the Chagas table while a nurse swabbed the crease of her elbow, then pushed a thin needle under her skin. Barajas' 4-year-old son, Justin, covered his eyes.

The 40-year-old, who emigrated from Mexico 12 years ago, had never heard of Chagas' disease but still wanted testing. "It's good to know," she said.

Chagas screening can be a hard sell for some. Gutierrez persuaded her family to get tested — everyone but her sister, whose late-night phone call finally led Gutierrez to treatment. Gutierrez said her sister fears that receiving a positive test result would "eat you up alive."

For Gutierrez, the disease's shadow remains, if more faintly. "You kind of forget that you have it until someone brings up the subject," she said.

She's determined to lead a normal life but also talks with her husband about their finances, their kids' college education and when he could remarry — just in case. "I don't know how much time I have," she said. "It could be 50 years, but I'm not sure."

Photos: Chagas' disease

erin.loury@latimes.com

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