2023-08-29 16:17:16
Dr. Rick Tarleton (right), who leads a team of researchers at the University of Georgia that has developed a promising new drug to treat Chagas disease, with researcher Ángel Padilla. Paula Andalo/KFF Health News
When Maira Gutiérrez was diagnosed with Chagas in 1997, neither she nor her family doctor had heard of the disease. She discovered it by chance, after participating in a Red Cross blood drive organized by her employer, Universal Studios.
Maira Gutiérrez discovered she had Chagas disease when she donated blood to the Red Cross in 1997. She struggled to find a doctor who knew anything about the disease. Photo courtesy/Carmen Echeverria (Carmen Echeverria)
The Red Cross tests donated blood for a variety of diseases, including Chagas disease, which is caused by a parasite and can silently develop for decades before causing symptoms. The test found Chagas in Gutiérrez’s body, and years later, in 2013, a CT scan confirmed that it was already in his heart.
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“They showed me the image with the trace of the parasite towards my heart. It was really scary,” said Gutiérrez, who is originally from El Salvador. Now at 50, she remains healthy but she performs a battery of annual tests to monitor for heart damage.
Ruby Harrison, a postdoctoral fellow at the University of Georgia, puts kissing bugs infected with the Trypanosoma cruzi parasite to sleep with gas. Paula Andalo/KFF Health News
He Trypanosoma cruzi, the parasite that causes Chagas disease, is transmitted through a triatomine insect, popularly called a vinchuca or “kissing bug”, because it tends to bite near the lips. These insects defecate on the skin, and the feces, which contain the parasite, can enter a person’s body through the nose or mouth, or through small breaks in the skin.
Chagas disease affects people mainly in Latin America, where the insect lives and breeds on thatched roofs and mud walls. It is not transmitted from person to person, except when the mother transmits it to the baby, or through blood transfusions or organ transplants.
But it is increasingly present in the United States, where it often goes unnoticed: the Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 people living in the country have Chagas disease, although the lack of awareness and testing means that only 1% of cases have been identified.
Infected “kissing bugs” sleep in a plastic container for 2-3 minutes. Paula Andalo/KFF Health News
Doctors, researchers and patient advocates say the United States should be doing much more to combat Chagas disease, which causes serious heart disease in about 30% of people They live with the parasite, and it can also lead to crippling digestive problems like enlarged stomach and colon. They are pushing for greater access to testing and treatment, and are optimistic about a new drug that is scheduled for human trials next year.
A bill in Congress to increase funding to fight neglected diseases, which supporters hope will be debated in the fall, could also help.
Rachel Marcus, a cardiologist and medical director of the Latin American Chagas Society, runs a Chagas testing clinic in northern Virginia. “They taught us that it’s something we don’t see in the United States,” she says. Paula Andalo/KFF Health News
Still, in the United States, there is “a tremendous lack of awareness about this disease,” said the Dr. Rachel Marcuscardiologist and medical director of the Latin American Chagas Society (LASOCHA), who runs a Chagas testing clinic in northern Virginia. “They taught us that it was something that you don’t see in the United States.”
A large part of the people with Chagas disease are from Latin America, and many of them do not have papers. Marcus points out that those most at risk for Chagas use community health centers, which could be great testing sites, but unfortunately they have limited resources and tend to focus on more common conditions like high blood pressure or diabetes.
Ronald Drew Etheridge, an assistant professor at the University of Georgia, studies the molecular tools used by the Trypanosoma cruzi parasite to adapt to various environments. He’s holding the kissing bug’s favorite food: blood. Paula Andalo/KFF Health News
At first, Chagas presents symptoms similar to those of a flu. But then it can go undetected for decades while it reproduces in the body. Drug treatments can sometimes eradicate the parasite, especially in its early stages, but the window of opportunity for early detection is short: it does not remain in the bloodstream for long, and it migrates to tissues and organs where it is more difficult. detect it.
Often, when the patient finally goes to the doctor, they have already developed serious complications, including heart rhythm abnormalities or dilated heart, when it does not pump the blood well. Patients may eventually need pacemakers or heart transplants.
The writer Daisy Hernández experienced Chagas disease in her family. The real barrier to Chagas care is inaction, she says. Courtesy photo/Dhanraj Emanuel (Dhanraj Emanuel)
“It is a disease that is the result of systemic failures in the health system,” said writer Daisy Hernández, author of “The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease”. In his book, Hernández tells the story of his aunt Dora, who was diagnosed with Chagas disease in the United States. Before her, in her country, Colombia, she underwent exploratory surgery because her belly was swollen: the doctors told her that she “had the stomach of 10 people” due to the terrible inflammation. No one suspected that she could have been caused by the Chagas parasite.
Hernández said that her interviews with more than 70 doctors and patients convinced her that the real barrier to Chagas care is inaction.
“While a person who lives in Virginia and is originally from Bolivia [donde el Chagas es endémico] You know that if you are diagnosed with Chagas disease you should start saving for a pacemaker,” said Hernández, “here the government does nothing and doesn’t even know what the disease is.”
In between 6 and 7 million people all over the world live with the parasite. In the United States, two long-standing drugs have gained FDA approval: benznidazole y nifurtimox, which can fight the parasite, but do not always eradicate it. These drugs can have serious side effects and are most effective if given early: Babies born with Chagas have a 90% cure rate if they receive treatment within their first year of life.
To combat the disease, doctors familiar with Chagas disease recommend testing pregnant women in communities at risk and, eventually, starting early treatment. They also advocate testing all potential organs for transplantation for Chagas. In 2018, a Connecticut man died after receiving a heart infected with the Chagas parasite, prompting a lawsuit and calls for Chagas testing to be mandatory. The organization that issues the rules on transplants in the country recently voted to require such evidence.
Few establishments in the country perform Chagas detection tests. Advocates say that with increased awareness, many health care providers could perform the initial tests and, if they come back positive, send the results to the CDC for confirmation.
However, raising awareness has been an uphill battle. The Center of Excellence for Chagas Disease, the only center in the country dedicated exclusively to the diagnosis and treatment of Chagas disease, recently suspended its operations after its director, the doctora Sheba Meymandiwill retire.
Meymandi, a pioneer in the diagnosis and treatment of Chagas disease, said she still volunteers at Olive View-UCLA Medical Center in Los Angeles, where the center was located, to ensure that her patients receive care. “The political leadership has stopped supporting the center and we are no longer actively testing,” she Meymandi said. She now refers Chagas patients to the cardiology clinic.
A spokeswoman for the county Department of Public Health wrote in a statement that the center is not technically closed and that the UCLA hospital’s cardiology department has taken over the treatment of Chagas patients with heart conditions. But at least for now it is not offering tests to the general public. California is the state with the highest estimated number of cases of Chagas.
Another hope to defeat Chagas lies in new drugs. The doctor Rick Tarleton, head of the Tarleton Research Group in the Department of Cell Biology at the University of Georgia, said his group had collaborated with Anacor Pharmaceuticals to identify and optimize compounds that could kill T. cruzi parasites. And they found one.
“He was able to completely eradicate the infection in mice and in non-human primates,” Tarleton said.
The team tested the compound in 19 macaques at a research center in Texas, which had acquired the parasite naturally. The infection was defeated, the monkeys had no significant side effects and are still clinically healthy after more than five years.
Tarleton’s team also noted that some of the parasites can become inactive, making them resistant to drug treatment. As a result, Tarleton said it’s critical not only to develop more effective drugs, but also to optimize the timing of treatments.
Tarleton and his team they hope to launch a clinical trial of the compound next year.
There is also some hope on the political front. Senator Cory Booker (D-NJ) reintroduced the Study, Treat, Observe, and Prevent (STOP) Neglected Diseases of Poverty Act in February to address the growing health problem posed by diseases like Chagas spreading in low-income communities. The list also includes dengue, leprosy and chikungunya.
“Any time we go into low-income communities and look for these diseases, we usually find them,” said the doctor Peter Hotez, who worked with Booker’s office on legislation and is dean of the National School of Tropical Medicine at Baylor College of Medicine. “Tragically, too often our nation ignores or neglects these communities, and we fail to find them.”
Meanwhile, Maira Gutiérrez, the patient who was lucky enough to have a consistent diagnosis and treatment, has some advice for them: “Donate blood, at least you will know if you have the parasite and it won’t cost you anything.”
This story was produced by KFF Health News, a national newsroom focused on in-depth treatment of health issues, which is one of the main programs of KFFthe independent source for health policy research, polling and journalism.
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