When Mayra Gutierrez was diagnosed with Chagas disease in 1997, neither she nor her primary care physician had even heard of the disease. She discovered her illness quite by accident after participating in a Red Cross blood drive organized by her employer, Universal Studios.
The Red Cross tests donated blood for a number of diseases, including Chagas, which is caused by a parasite and can develop quietly for decades before causing symptoms. The test found Chagas in her body, and an MRI years later, in 2013, confirmed it had reached her heart.
“They showed me the image with the trace of the parasite in my heart. It was really scary,” Gutierrez, originally from El Salvador, said in Spanish. Now 50, she remains healthy but undergoes a battery of tests every year to monitor for heart damage.
Trypanosoma cruzi, the parasite that causes Chagas is transmitted by an insect called a triatomine, known as a kisser because it usually bites near the lips. The bugs defecate on the skin, and feces that may contain the parasite can enter a person’s body through the nose, mouth, or breaks in the skin.
Chagas disease mostly affects people in rural Latin America, where the insect thrives in thatched roofs and mud walls. It is not transmitted from person to person except when the mother passes it to a newborn or through a blood transfusion or organ transplant.
But it is increasingly present in the United States, where it often goes unrecognized: The Centers for Disease Control and Prevention estimates that more than 300,000 people living in the US have Chagas, although a lack of awareness and testing means that only 1% of cases have been identified.
Doctors, researchers and patient advocates say the nation can do much more to fight Chagas, which causes serious heart disease in about 30 percent of people infected and can also lead to crippling digestive problems such as enlargement of the esophagus and colon. They are pushing for greater access to testing and treatment and are optimistic about a new drug being tested in humans next year. A bill in Congress to increase funding for rare diseases, which supporters hope will be debated in the fall, could also help.
Still, there is a “tremendous lack of awareness of this disease” in the U.S., said Rachel Marcus, a cardiologist and medical director of the Latin American Chagas Society, which runs a Chagas testing clinic in Northern Virginia. “We were taught that this is something we don’t see in the United States.
A large number of those with Chagas are from Latin America, and many live in the US without legal permission. Marcus notes that many of those most at risk for Chagas use community health centers, which could be testing sites, but have limited resources and tend to focus on more common conditions such as high blood pressure and diabetes.
Chagas initially causes flu-like symptoms, but can then go undetected for decades as it reproduces in the body. Drug treatment can sometimes kill the parasite, especially in its early stages, but the window for early detection is short: it doesn’t stay long in the bloodstream, instead migrating to tissues and organs where it’s harder to detect.
Often by the time a patient sees a doctor, they have already developed serious complications, including heart rhythm disorders or an enlarged heart that doesn’t pump blood well. Eventually, patients may need pacemakers or heart transplants.
“This is a disease resulting from systemic failures in the health care system,” said writer Daisy Hernandez, author of “The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Negligence of a Deadly Disease.” In her book, Hernandez tells the story of her Aunt Dora, who was diagnosed with Chagas in the United States. Previously in her home country of Colombia, she had exploratory surgery for a swollen stomach and was told by doctors that she had the “gut of 10 people” due to the amount of inflammation. No one suspected that it could be caused by the Chagas parasite.
Hernandez said interviews with more than 70 doctors and patients have convinced her that the real obstacle to Chagas care is inaction.
“While one lives in Virginia and is originally from Bolivia [where Chagas is endemic] knows that if they are diagnosed with Chagas, they have to start saving for a pacemaker,” Hernandez said in Spanish, “here the government does nothing and doesn’t even know what the disease is.”
Between 6 and 7 million people worldwide live with the parasite. In the US, two long-standing drugs have been approved by the FDA: benznidazole and nifurtimox, which can defeat the parasite but don’t always kill it. Medicines can have serious side effects and are most effective if given early: Babies born with Chagas have a 90% cure rate if treated in their first year of life.
To combat the disease, doctors familiar with Chagas recommend testing pregnant women from at-risk communities and push for earlier treatment. They also recommend screening of all transplanted organs. In 2018, a Connecticut man died after receiving a heart infected with the Chagas parasite, sparking a lawsuit and calls for mandatory organ screening. The organization that guides US transplant policies recently voted to require such testing.
Few facilities in the country screen for Chagas. Advocates say that with more awareness, many health care providers could conduct initial screenings and, if positive, send the results to the CDC for confirmation.
However, building awareness has been an uphill battle. The Chagas Center of Excellence, the only center in the U.S. dedicated to the diagnosis and treatment of Chagas, recently ceased operations after its longtime director, Sheba Meimandi, retired.
A pioneer in Chagas diagnosis and treatment, Meymandi said she still volunteers at Olive View-UCLA Medical Center in Los Angeles, where the center is based, to ensure her patients receive care. “The political leadership has stopped supporting the center and we are no longer actively testing,” Meimandi said. She now refers Chagas patients to the cardiology clinic.
A spokesman for the county’s Department of Public Health wrote in a statement that the center is not technically closed and that the treatment of Chagas patients with heart disease has been taken over by the cardiology department at UCLA Hospital. But at least for now, it doesn’t offer general screening for Chagas infection. California has the most cases of Chagas of any state.
Another hope for defeating Chagas lies in new drugs. Rick Tarleton, head of the Tarleton Research Group at the University of Georgia’s Department of Cell Biology, said his group has collaborated with Anacor Pharmaceuticals to identify and optimize compounds that can kill T. cruzi parasites. They had found one.
“It can completely eradicate the infection in mice and nonhuman primates,” Tarleton said.
The team tested the compound on 19 macaques at a research center in Texas that had acquired the parasite naturally. The infection was defeated, the monkeys had no significant side effects and are still clinically healthy more than five years later.
Tarleton’s team also noticed that some of the parasites could become latent, making them resistant to drug treatment. As a result, Tarleton said, it is critical not only to develop more effective drugs, but also to optimize the timing of treatment.
Tarleton and his team hope to begin a clinical trial of the compound next year.
There is some hope on the political front as well. Sen. Cory Booker (DN.J.) reintroduced the Neglected Diseases of Poverty Research, Treatment, Surveillance and Prevention (STOP) Act in February to address the growing health problem posed by diseases like Chagas spreading in communities with low incomes. The list also includes dengue fever, leprosy and chikungunya.
“Whenever we go into low-income communities and look for these diseases, we usually find them,” said Peter Hotez, who worked with Booker’s office on the legislation and is dean of the National School of Tropical Medicine at Baylor College of Medicine. “Tragically, too often our nation overlooks or overlooks these communities, and we fail to look.”
Meanwhile, Mayra Gutierrez, the patient who was lucky enough to have a diagnosis and consistent treatment, has some advice for them: “Donate blood; at least you’ll know if you have the parasite and it won’t cost you anything.
This article was created by KFF Health Newswhich issues California Healthlineeditorially independent service of California Health Care Foundation.
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This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health policy research organization not affiliated with Kaiser Permanente.
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