World Chagas Disease Day 2023: How CDC strives to overcome barriers to care

Given this year’s World Chagas Disease Awareness Day focus on primary health care, we wanted to re-share with you how CDC and partners are working to address health inequities and barriers to care for individuals in the United States who may be at risk for Chagas disease.

It’s been more than 110 years since a Brazilian physician named Dr. Carlos Chagas discovered the parasitic disease that would be named after him, but—despite affecting more than an estimated 300,000 people in the United States—Chagas disease remains underrecognized by healthcare providers in the U.S.

Triatomine bugs (“kissing bugs”) transmit the parasite that causes Chagas disease.

First diagnosed by Dr. Chagas on April 14, 1909, Chagas disease is caused by the parasite Trypanosoma cruzi which is found only in the Americas and is primarily transmitted to animals and people by triatomine bugs in rural areas of Latin America where poverty is widespread.

Chagas disease can also be transmitted via blood transfusion, organ transplantation, and mother-to-baby. An estimated 300 babies are born with Chagas disease in the U.S. every year and most are undiagnosed. If left untreated, Chagas disease can cause heart failure, stroke, and even death.

We recognize World Chagas Disease Day today to raise awareness of this disease, call out the barriers to care that exist for those suffering from it, and describe the work CDC and its partners are doing to overcome these barriers and promote health equity in the United States.

Health equity describes a state in which all people have equal and fair opportunity to reach the highest level of health. Unfortunately, certain societal hurdles—poverty, illiteracy, underinsurance, and stigma—threaten this
equity.

Most Chagas disease cases in the U.S. occur in immigrants from Latin America. Typically, people are infected by the bugs that transmit Chagas disease in rural Latin America, often don’t realize they are infected, and then, after coming to the U.S., struggle to find and receive care.

“The first barrier is finding a doctor that actually knows anything about Chagas disease,” describes Dr. Rachel Marcus, a CDC collaborator and the Medical Director of the non-profit Latin American Society of Chagas (LASOCHA) located outside Washington D.C. “Doctors around here have said to me ‘I’ve never seen a Chagas case.’ They have, actually. They just didn’t realize it at the time… If you’re a physician trying to work through a Chagas disease diagnosis, what do you do when you don’t even know where to start?”

“The lack of provider awareness certainly jumps out as a barrier to care,” agrees Dr. Sue Montgomery, one of CDC’s Chagas disease experts. “We frequently get calls from providers who have a Chagas patient and don’t know what next steps are. They ask me: ‘How do we treat this?’ Even infectious disease doctors with decades of experience don’t always recognize Chagas disease when they see it.”

Insufficient health care provider awareness is just one of many barriers to Chagas care that exists in the U.S. For example:

• The absence of Chagas disease screening programs in the U.S. means people often don’t know they have Chagas disease in the first place. If you don’t know you have Chagas disease, you cannot possibly receive care.
• People who are at increased risk often cannot afford Chagas disease care and feel excluded from healthcare services.
• People experience—or fear—stigmatization around disease and immigration status.
• There are limited options in the U.S. for places to receive care.¹

“What I see most often is a lot of low English literacy and low healthcare literacy,” explains Dr. Marcus. “On top of that, maybe the individual is undocumented so it can feel difficult or scary to advocate for him or herself. All of these barriers are typical in the immigrant experience.”

Today, approximately 40,000 women of childbearing age living in the United States have chronic Chagas disease and most are unaware that they have an infection that can be passed to their children. CDC and its partners are working to protect these mothers and babies.

To lessen the burden of Chagas disease in America and chip away at the barriers to care, CDC and its collaborators seek to educate health care providers and patients about the risks of Chagas disease and its treatments.

At LASOCHA, Dr. Marcus and her colleagues provide access to medical services to people from the Latin American community in the D.C.-area who are at increased risk. They also raise awareness of Chagas disease within the community and with local health care providers. To effectively get the message out about Chagas disease, Dr. Marcus says you have to “keep talking and talking and talking until you find someone in the health care system with whom this illness resonates. Once you find that person, real change can take place.”

Over the past six years, CDC has funded three academic partners to develop new strategies, educational tools, materials, and guidelines to improve awareness and prevention of Chagas. “Our goal is to help give physicians the knowledge they need to have ‘Aha! I know what this is!’ moments when they encounter a Chagas disease patient,” says Dr. Montgomery.

Recent activities from CDC’s funded partners include:

• Boston Medical Center collaborators are using a successful screening program called Strong Hearts as a model and expanding to other sites across Massachusetts. A key goal is to screen pregnant mothers for Chagas disease and then test and treat infants. They are also developing a toolkit to help other sites set up similar programs.
• New York’s Einstein College of Medicine is working with healthcare providers around New York City to develop Chagas disease centers of excellence to screen and treat patients at risk. They are also organizing opportunities to educate physicians, examine gaps in knowledge, provide networking, and answer questions about Chagas disease. They have organized a webinar series on diseases that disproportionately affect immigrants, including Chagas disease.
• San Diego State University partners are using their Texas state-accredited Chagas disease curriculum for community health workers in underserved, remote, and rural communities and are expanding to community health workers in other states.  The team also hosted a 3-part One Health series on Chagas disease employing the Extension for Community Healthcare Outcomes (ECHO) model. This series covers topics such as vector recognition and distribution across the U.S., animal reservoirs, and up-to-date epidemiology of Chagas disease in the U.S.

In addition, CDC raises awareness and improves diagnosis and treatment of Chagas disease through continuing medical education materials and patient and provider educational information. Until 2020, CDC provided medications for U.S. physicians treating patients with Chagas disease. Now, the two drugs used to treat Chagas disease in the United States have FDA approval and are available with a prescription. CDC also continues to support diagnostic testing and offers 24/7 consultations to health care providers.

To read more about CDC’s strategies for addressing Chagas disease and other parasitic diseases in the United States and abroad, please see DPDM’s 2021–2025 Strategic Priorities.

Today, CDC joins partners around the world in raising awareness about Chagas disease.

Share our World Chagas Disease Day features:

• CDC Global Health Feature
• Infographic about the global burden of Chagas disease
• Social media cards about Chagas disease
• @CDCGlobal on Twitter
• CDC Global on Facebook
• CDC Global Health on Instagram

• General information about Chagas disease
• Printable resources for patients and healthcare providers (in English and Spanish)
• Accredited continuing education for healthcare providers
• Disease of the Week: Chagas Disease

¹ PLOS Neglected Tropical Diseases: Proposed multidimensional framework for understanding Chagas disease healthcare barriers in the United States