Shaping Neglect: New Challenges for Chagas Disease

The “One Big Beautiful Bill” is now law. This legislation, considered to be the cornerstone of the second Trump administration’s policy goals, has widely been criticized for its projected impacts on public health and reduction of Medicaid benefits, even by some members of the Republican party.

The legislation targets Medicaid, cutting more than $1 trillion dollars from the program by 2034. Its transformation of the Medicaid program includes work requirements for all adults under 65, reduced funding for states that provide Medicaid access to immigrants, as well as reduced funding to states that specifically expanded Medicaid under the ACA.

One particular concern is that these cuts could make neglected tropical diseases even more neglected by erecting barriers to patient care. An example is Chagas disease, a parasitic disease caused by Trypanosoma cruzi. Chagas disease is typically transmitted through the triatomine bugs, or more rarely through mother-to-baby transmission, blood transfusion, or organ transplants. Chagas disease disproportionately affects immigrants from Latin America and has a strong correlation with poverty. The disease starts off with an acute phase, and can lead to severe long-term consequences like cardiovascular and gastrointestinal failure.

However, Chagas disease is generally treatable using antiparasitic medications like benznidazole,  if caught early. Patients in the U.S. are vulnerable in ways that make it difficult to get early treatment for a variety of reasons including their socioeconomic and immigration status. Many are undocumented. In the U.S., physicians are largely unaware of this disease that as many as 300,000 of residents have. This is similar to the number of people who get Lyme disease in the U.S. each year. Worldwide, there is an abysmal diagnosis rate of 1 percent.

It is easy to write off the lack of awareness as stemming from Chagas disease’s status as a neglected tropical disease. However, Chagas disease illustrates the way in which political, legal and medical systems work together to create neglected diseases and neglected populations. To use the language of the late Paul Farmer of Harvard Medical School, this neglect is a form of structural violence. Chagas disease receives chronic scientific neglect, as it receives little funding and is largely ignored by academic medical institutions or societies. But it is also impacted by legal structures and political choices.

National public health entities like the Centers for Disease Control (CDC) have paid little attention to Chagas. Chagas disease is not a nationally notifiable disease, meaning that the CDC does not collect information from providers on each new case of the disease or track its prevalence. Patients with Chagas must have two confirmatory tests to confirm their diagnosis of Chagas disease. One of these tests, a serologic test, can be difficult to access. To provide greater access, the CDC used to provide confirmatory testing for patients with suspected Chagas disease.

However, the CDC no longer does such testing, putting high levels of pressure on providers who must find state public health entities or private labs to fill the testing gap. This can lead to long wait times between the initial suspicion of Chagas disease and the actual diagnosis for patients, if they ever get a diagnosis at all.

While the FDA eventually approved benznidazole for the treatment of Chagas disease, it did so much later than other parts of the world, and there has been little effort to encourage a next-generation version with fewer side effects, or one that can be used in more patient populations, like during pregnancy.

Patients with Chagas disease can also struggle to access care due to variations in state programs. Patients may be able to receive care in some states and not others because certain states have more expansive access to Medicaid on the grounds of socioeconomic status or immigration status. These variations have created gaps in patient care.

On top of all of these existing issues are new political choices being made by the current administration and Congress. Even prior to the passage of the “OBBB,” several states did not provide non-emergency coverage to immigrants of any kind, including those here legally. However, states that opted into Medicaid expansion to increase coverage for those populations could now face new punishment.

There are also 14 states that use their own state dollars to provide some level of (typically very limited) health care to individuals without regard to their documentation; the new law slashes federal funding to such states based on how they are spending their own money. Practically, this means that much of the patient population with Chagas will lose access to health care, whether due to their states no longer being able to fund them because of their immigration status, or the state not being able to maintain existing income eligibility for Medicaid.

Patients with Chagas disease are also likely to be affected by other actions of the current administration. One major example is cuts to Federally Qualified Health Centers which are specifically designed to provide treatment and care to underserved communities and populations, such as migrant workers. Furthermore, the federal government is slashing funding for state and local public health departments, which means the ability of states to monitor and provide testing for Chagas disease could plummet even further.

Chagas disease is one of many diseases that remain untreated in part due to structural violence, and the situation will likely get worse given the current administration’s priorities. Their new policies not only will produce unique harms, but also will interact with other pre-existing policies to make it even harder to give medical attention to neglected diseases and patient populations.