Global Health Institute

This semester I’ve had the opportunity to work with Dr. Claire Standley on a projected related to Chagas disease—specifically, we have been gathering data on the current burden of Chagas disease within the United States and the ways in which surveillance of the disease can be improved. Chagas disease is caused by the parasite Trypanosoma cruzi, predominantly spread by a T. cruzi-infected triatomine bug endemic in Latin America. Transmission can also occur via blood transfusions, organ transplants and congenitally from a mother to her baby. It is estimated roughly 300,000 individuals with T. cruzi livein the United States.

While treatment for those who are infected is available and highly-effective, many of these individuals have not been diagnosed as no national screening program exists. Furthermore, those who are not diagnosed are at risk of developing Chagas cardiomyopathy, which is life-threatening.

Currently, incidence cases of Chagas disease are predominantly diagnosed by blood donor screening which was implemented in 2007. Given the limitations of this in diagnosing and subsequently treating those with the disease, our team has been focused on advocating for screening on behalf of at-risk pregnant women and their offspring for potential infection. It is estimated that 300 congenital infections occur each year. While congenital screening has been proven to be both cost-effective and successful, Chagas disease in the United States is rarely screened for in this setting and many obstetrician-gynecologists are unfamiliar with the disease.

In contrast, this screening is being widely conducted in other countries. For example, in a rural community in Guatemala, neonatal screening is performed at the primary health care level to diagnose infants with Chagas disease. This screening is both simple and low-cost, consisting of microscopic examination of an infant’s blood, and supplemented with educational programs for physicians and community members to increase their awareness of the disease. Screening for pregnant women from Latin America has also been mandated in two autonomous communities in Spain—Valencia and Catalonia. Through these programs, pregnant women and their newborns are screened and, if necessary, treated for T. cruzi infection. If the mother is found to be infected, screening and treatment is extended to her other children who might also have the disease.

Implementing similar programs in the United States could be done by establishing perinatal screening for Chagas disease in women at risk of infection, with screening for infection in their newborns integrated into existing postnatal follow-up. This might be challenging to develop on a national scale due to differences between states and the multistep nature of this process.

However, the impact of doing so has the potential to be substantial, including improving data on the burden of Chagas disease within the United States, reducing morbidity from congenital Chagas disease and addressing health disparities in vulnerable populations.

Jennifer Ayres (NHS ’22) is an undergraduate studying Global Health and a student fellow with the Global Health Initiative.

Disability and health; associating the two together seems like an obvious correlation. The following words are often used interchangeably with disability in discussions about disability as a “health” problem: “impairment,” “handicap,” and “sick.” The biomedical model of disability, focusing on health purely, is the most dominant model of disability that is used to understand disability in the context of global health. 

I am able-bodied, and throughout most of my life, my perception of disability was primarily based on a determined dynamic between myself and my younger sister who was diagnosed with “cerebral palsy.” I was also accustomed to the aforementioned biomedical model of disability. I understood disability as an absolute, inferior condition and a pathology in need of treatment, rehabilitation, and mitigation. While there is no right or wrong model to understand or view disability, I learned over the course of many years that focusing on disability solely as resulting from an individual person’s physical or mental limitation results in individualizing the problem. Furthermore, this tends to reinforce systems in place that tend to perpetuate discriminatory practices against persons with disabilities in able-bodied spaces, including clinical and health care facilities as exemplary global sites.

So what? How can we rethink about global health with respect to disability? What can we do to promote inclusiveness in global health? 

Considering the relationship between disability and health is complex and complicated as disability is a cross-cutting issue that interacts with a wide range of issues such as sustainability, development, business, and education to name a few. Furthermore, persons with disabilities are a very heterogeneous group, including people with a wide range of disabilities, age, gender, race/migrant situation, and environments. 

Increasingly, the question is no longer if people with disabilities are included in global health efforts. The disability movement’s credo, “Nothing About Us Without Us,” has resulted in many initiatives, with well-intentioned statements and disability inclusive policies, in mainstream global health efforts. Beginning in the 1970s, the global disability rights movement led by persons with disabilities themselves, led to the landmark UN Convention on the Rights of Persons with Disabilities (CRPD) adopted in 2006, and ratified by more than 170 countries today. In addition, persons with disabilities are mentioned 11 times in the Sustainable Development Goals in keeping with CRPD, implicitly adhering to the call to “leave no one behind” and explicitly that the goals and targets are related to disabilities.

However, much remains to be done. To achieve global health and beyond, we need to do more than just mainstreaming disability-related issues and including persons with disabilities in able-bodied spaces. We, as a diverse group of both disabled and able-bodied people, need to work together to promote measures to have representations of persons with disabilities in leadership positions and ensure that the global health landscape is also for and by persons with disabilities. 

Jinseul Jun (MAAS ’20) is a graduate in the Arab Studies program (MAAS) at Georgetown – School of Foreign Service, and a student fellow with the Global Health Initiative.