Although 100 years have passed since Chagas was formally documented, little is known about the disease or how to treat it.
When Maira Gutierrez, a 37-year-old Mission Hills resident, found out 12 years ago that she was infected with Chagas, even the physicians she sought for help did not know how to treat her condition, or know that there were medications available to her.
She was told that she probably acquired the disease while she was in El Salvador and that an indeterminate amount of time would pass before she began to experience heart palpitations, and eventually heart failure.
“It’s new to a lot of people, and they don’t know what to think of it. They tend to stay away because they think it’s contagious,” Gutierrez said.
However, Chagas is not spread by person-to-person contact, but through insect vectors called “kissing bugs,” whose intestinal parasites cause the disease, said Sheba Meymandi, cardiologist and professor at the David Geffen School of Medicine.
When the insect feeds, it also defecates, and scratching the bite rubs the parasite into the wound and induces infection.
Several species in the U.S. carry the same parasite, but the disease, which is prevalent in Latin America, is not likely to spread in the U.S.
“In the U.S., the bug is better-mannered. It feeds and then removes itself,” she said.
Though Chagas has reached epidemic levels in Latin America, killing more people a year than malaria, treatment for Chagas is rare, and medications are few.
Meymandi said that funding for Chagas is difficult to acquire because it is considered a disease of low-income Latin American immigrants, making it a politically sensitive topic. Since her work began two years ago, she has not received any government funding.
To mark the 100th anniversary of the disease’s documentation, the organizations Drugs for Neglected Diseases initiative and Doctors Without Borders are holding several events this week in Los Angeles.
Oliver Yun, medical editor for the U.S. branch of Doctors Without Borders, said that the organizations chose Los Angeles because it is home to a large, at-risk population. Los Angeles also has the only clinic in the country that treats Chagas, Meymandi’s Olive View ““ UCLA Medical Center.
They are hoping to capture the attention of researchers and also gain the support of the medical community by holding symposiums and talks. Currently, there is no international medical consensus on the best course of treatment, and no effective pediatric dosage has been determined.
Eric Stobbaerts, coordinator of Drugs for Neglected Diseases initiative’s Chagas campaign, said, “There are too many infected to not give a medical answer.”
Chagas affects those who live in rural areas and work in the field ““ places the insects inhabit.
The disease is most apparent in the acute phase, but the symptoms of fever and inflammation can suggest any number of disorders, making a diagnosis of Chagas difficult.
Chagas is called a silent disease because it enters an indeterminate phase for as long as several decades, during which there are no symptoms. By the time most medical professionals encounter the disease, it has progressed to the advanced stage when heart problems surface and possibly gastrointestinal problems as well.
At that point, many are unwilling to take the risk of treating the patient, Stobbaerts said. Stobbaerts described the cycle as “a fish that bites its own tail.”
He added that of the more than 1,500 medications developed in the last three decades, only 21 were for neglected diseases, which are tropical diseases common in impoverished areas.
Stobbaerts said that none of these medications were for Chagas, making Chagas one of the most neglected in the category of neglected diseases. But medications are difficult to develop without funding.
In 2007, $2.5 billion was spent on research for infectious diseases, but only one-quarter of 1 percent was spent on Chagas.
The two medications currently in use require many repeat treatments and also have many side effects but have been shown capable of putting the disease into remission.
Meymandi sets up screenings for Chagas in local churches with large Hispanic populations every other Sunday. She postulates that for every 100 people who walk in, one or two of them will receive a diagnosis of Chagas.
Currently there are 300,000 cases of Chagas in the U.S. and as many as 15 million infected around the globe.