No longer silent
Living with Chagas in LA: Jessica’s story
Jessica was the last member of her family to come to Los Angeles from El Salvador in search of a better life. She came from a small village and remembers seeing chinches – kissing bugs – on the floor of the adobe house where she lived as a child.
She was bitten but thought nothing of it.
Almost five years ago, she went to a “health fair” in a church near Van Nuys, her heavily Latino San Fernando Valley neighbourhood. There she met volunteers from the Center of Excellence for Chagas Disease (CECD) at the Olive View-UCLA Medical Center in Los Angeles.
She learned about Chagas disease and the volunteers took a sample of her blood. She had never heard of the disease, even back in El Salvador, and was surprised to learn los chinches in her house carried this disease. She was shocked to hear that the disease can kill you, and was endemic in Central American countries like El Salvador.
“If you don’t hear from us that means you don’t have the disease,” the volunteers told her.
Chagas screening tent run by the CECD at a health fair in a church Santa Monica, California.
One month later a doctor from the CECD called Jessica and asked her to come to the clinic, where she was told she had Chagas disease. They explained that she could be infected without ever having symptoms and that it is important to be treated to avoid serious complications later in life.
The disease is often called the "silent killer" for this reason - many never know they are infected until it is too late.
She eventually received the medicine benznidazole through the CECD. Benznidazole is one of the two drugs used to treat this parasitic illness, and was only recently approved by the U.S. Food and Drug Administration (link here). Because it was not approved at the time, the CECD had to obtain the drug through the Centers for Disease Control and Prevention.
Jessica did not experience the side effects often associated with the medicine. She completed the treatment course without any troubles.
Now Jessica is feeling perfectly fine and looks forward to the future. She is not going to let her Chagas diagnosis stand in the way. Although Chagas disease is not contagious, Jessica still encounters misunderstandings.
“Some of my close friends think I’m contagious and won’t share a glass with me. But I feel completely fine, I’m healthy and I know that I’ll be ok. I want to start a family.”
The CECD has treated over 300 patients like Jessica since opening in 2007, while screening over 8,000 people in the Los Angeles community. In the U.S., only a handful of providers offer treatment for the over 300,000 people with Chagas disease. An estimated 6 to 8 million people are affected worldwide - the disease is endemic in 21 countries across Latin America and kissing bugs transmit Chagas in much of the United States.
Chagas disease kills more people in the region each year than any other parasite-born disease, including malaria.
As part of its Chagas Access Project which aims to expand diagnosis and treatment for Chagas disease throughout the Americas, the Drugs for Neglected Diseases initiative works closely with the CECD to support its efforts to bring treatment to more U.S. patients.
Gisele Munoz of the CECD examines a patient at Olive View Medical Center
Realizing that people with Chagas disease in Los Angeles face multiple barriers to accessing healthcare, including transportation, language, immigration status, and medical coverage, the CECD provides a free screening program in conjunction with churches and other organizations in the city’s Latin American community.
When positive cases are detected, treatment is offered by the CECD.
Jessica hopes that Chagas will be just a footnote in her life.
Unfortunately, like so many other Chagas patients, she cannot positively say she has been “cured” because of a lack of effective "test of cure" for this disease, but she is confident her treatment worked. Her case clearly shows the importance of early detection and treatment of Chagas but also shows the challenge that lies ahead to bring more people infected with Chagas out of the shadows before it is too late.
No longer silent