When Jenny Sanchez was pregnant, she asked her doctor in Virginia to test her for Chagas, also known as the “kissing bug disease.” She was worried about passing it onto her son and putting him at risk for heart failure one day. In Bolivia, where she was born and raised, expectant mothers were routinely screened for Chagas, but her American doctor had never heard of it.
“I thought maybe I was saying it incorrectly,” says Sanchez, a 44-year-old microbiologist for whom English is a second language.
But once Sanchez succeeded in communicating, the doctor told her to not worry. Chagas is transmitted by triatomine insects endemic to Latin America, not Virginia. Sanchez, however, knew the disease could live in the body for decades without producing any symptoms and could be passed from mother to child.
After giving birth to her son in 2002, Sanchez returned to Bolivia and was tested. The results were negative, but the experience got her thinking: How many other immigrant mothers—not to mention grandmothers, husbands, brothers and children—were living in Virginia without knowing if they had the deadly disease? After all, Bolivia has the highest rates of Chagas disease in the world, according to the Drugs for Neglected Diseases Initiative, and estimates from the U.S. Census Bureau show that Virginia is home to more Bolivians than any other state in the country, including California and New York combined.
As it turned out, the first documented case in the United States of a mother transmitting Chagas to her baby would eventually happen in Northern Virginia in 2010.
The number of people with Chagas disease just outside the nation’s capital is small—about two dozen cases, according to interviews with local physicians—but doctors and experts say they wouldn’t be surprised if the numbers were higher. Doctors, unfamiliar with the disease, are not routinely screening for it, and many patients tend to be undocumented immigrants without health insurance. While Chagas doesn’t pose a risk to the general population in the U.S., patient advocates, like Sanchez, believe the disease continues to be ignored because of its connections to poverty and immigration.
* * *
According to the World Health Organization, an estimated 8 million people have Chagas disease worldwide, most of them in Latin America. The triatomines, or the so-called kissing bugs, live in the cracks of walls in rural houses made of mud and thatched roofs and they bite people at night, passing the parasite through their feces. The bite itself is painless, and many people never show any signs of the disease. A third of those with Chagas, however, develop heart disease or megacolon, and untreated, they die from what appear to be sudden heart attacks. An estimated 11,000 people lose their lives every year to the disease, according to the WHO.
Because of migration, patients with Chagas are showing up everywhere from Spain and Italy to Japan and Australia. The Centers for Disease Control and Prevention estimates that 300,000 people are infected with Chagas in the U.S. A clinic devoted to diagnosing and treating the disease opened at Olive View-UCLA Medical Center in Los Angeles in 2007, and, according to the CDC, doctors in New York City and Georgia are screening patients who might have been exposed to the disease in their countries of origin.
Dr. Rachel Marcus, a cardiologist, believes Northern Virginia could be “ground zero” for Chagas disease, because of the volume of immigrants from Bolivia, where the disease is endemic. In 2012, she gave up her private practice to focus on patients with Chagas disease. If colleagues thought she would never find a patient with a tropical disease near the Beltway, they were wrong.
Marcus took a job at a cardiac ultrasound lab after leaving her practice, and one of the first patients to walk through her door was an immigrant who needed a heart transplant. He was from Brazil and told her the kissing bug was prevalent in his hometown. When Dr. Marcus looked at his EKG, she knew he had Chagas.
“If you were to find that EKG from an area where Chagas is common, it’s diagnostic,” she said. American doctors, however, had never made the connection. She sent his lab results to the CDC, which confirmed that the patient had Chagas.
According to Dr. Susan Montgomery, who leads the epidemiology team at the CDC, American doctors started to hear about Chagas disease in 2007 when blood banks in the U.S. began screening for it and sending people letters informing them that they had tested positive and should see their physicians. Health care providers started contacting the CDC and they haven’t stopped. In a ranking of the common phone inquiries the CDC receives, “Chagas disease is always number two every single month,” Montgomery said.
In 2010, one of those calls came from Northern Virginia. Pediatric infectious disease doctors there were seeing an unusual parasite in the blood smears of a baby who’d been born prematurely. The mom was a 31-year-old woman from Bolivia, and the baby, who’d been born at 29 weeks, weighed slightly more than 4 pounds. He seemed to be fighting an infection, and doctors assumed it was sepsis and treated him with antibiotics. Then they saw the parasite and talked with the mom. In Bolivia, expectant women are usually tested for Chagas, and yes, she remembered. With her previous pregnancy, she’d been told she had Chagas.
“It’s not something that we think of asking right away,” said Dr. Julie-Ann Crewalk, one of the pediatricians from the private practice that handled the case. She and her colleagues have only had two diagnoses of children with Chagas, but, she said, “I wouldn’t be surprised if the numbers were higher and we’re just not seeing it.”
The newborn was treated for Chagas with medications distributed by the CDC, and by his first birthday, he was considered cured. Crewalk doesn’t know about the mother. While the CDC provides medication for free, it doesn’t have a curative effect for adults with chronic Chagas, and it’s hard, if not impossible, for moms with Chagas and no health insurance to see the doctors who would connect them to the CDC.