Writing an essay about a topic at the intersection of science, technology, and human rights was right up Neil Thivalapill’s alley. The undergraduate student winner of the AAAS Science and Human Rights Coalition’s annual student essay competition had studied biology and human rights at Columbia University, from which he’d just graduated in 2018. His winning essay was entitled “The Etiology of Rights: Intersecting the Right to Health and the Right to Science for the Neglected Tropical Diseases.” But his interest in human rights and science had taken root long before his college years, when he was a young child growing up in New York City.
Born and raised in New York by parents who had immigrated to the United States from India, Thivalapill, 22, grew up seeing many examples of disparities amongst different populations. He learned that factors such as where one falls on the socioeconomic scale, ethnicity, and immigration status can often impede access to good health care. Citing an example, Thivalapill said, “A cardiovascular event could mean different outcomes for different races.”
The health problems he had to contend with early in his life served to particularly sharpen Thivalapill’s perspective on the issue of unequal access to healthcare. When he was six months old, Thivalapill was diagnosed with a chronic kidney condition that required him to receive dialysis on a regular basis. He is cognizant of the fact that there were some aspects to his life that made it possible for him to get the healthcare he needed: While his family had limited economic resources, his parents spoke English and were able to understand the information doctors conveyed to them, and were thus able to make informed decisions about various courses of action. His family also lived near one of the biggest New York City hospitals, which made it easier for Thivalapill to get medical treatment.
Before he was three years old, Thivalapill’s condition had largely been resolved. But knowing that he had had factors in his life that made it possible for him to get good healthcare made him more keenly aware of those who didn’t have his advantages. “I hear stories about people having difficulty accessing resources,” said Thivalapill. “Thinking about that is sad and upsetting, but galvanizing.”
One example of the way language and socio-cultural barriers can pose an impediment to getting proper medical care is something as seemingly small as the word “once,” which means the number 11 in Spanish, noted Thivalapill. When a patient’s medication prescription label says take once a day, someone who speaks Spanish may understandably misinterpret that instruction as taking “11”—a critical discrepancy that can potentially lead to dangerous medical consequences. “It can have a severe clinical impact,” said Thivalapill.
Thivalapill carried this heightened awareness about disparity in healthcare access to Northwestern University, in Evanston, Illinois, where he studied biology and legal studies. “People were confused—was I studying medicine or law?” said Thivalapill. “My interest was always both health and human rights.”
In his freshman year, Thivalapill joined a program called GlobeMed, a student-founded group formed at Northwestern in 2006 to organize college students to help improve the health of people who are living in poverty around the world. That following summer, before he began his sophomore year, Thivalapill completed a project with Northwestern GlobeMed’s partner in Uganda, the Adonai Child Development Center, where researchers investigated reasons for a rising incidence of malaria in the community of Namugoga, Uganda. After he returned from Uganda, Thivalapill continued to work with GlobeMed and became a fellow for their Global Headquarters, located in Evanston; his work included providing support for the east coast chapters of GlobeMed.
Thivalapill then transferred to Columbia University, in New York City, after his sophomore year to major in human rights at the Institute for the Study of Human Rights. He also continued to study biology, making him a double major in both biology and human rights.
After his junior year, Thivalapill spent his summer in Swaziland, where he was responsible for the analysis of data for a study designed to investigate the reasons for poor adherence to preventive tuberculosis treatment for HIV-positive children and adolescents. “HIV-positive individuals and children are most at risk for tuberculosis,” said Thivalapill. “Most of my day involved working on the statistical analysis of the data and preparing our results for dissemination to key stakeholders working on this issue in Swaziland like the National TB Control Programme of Swaziland,” said Thivalapill. He analyzed the research to present to conferences and prepare for publication and the results were presented at the International AIDS Conference in Amsterdam this past summer.
While in Swaziland, Thivalapill witnessed firsthand the profound effect social stigmas can have on health. According to Thivalapill, stigma is often not added in the calculation of why people don’t adhere to treatment. “Clinical providers have to take into account that if a community health worker is seen going into someone’s house, the stigma can have implications for [that patient’s] sexual life, job, career, and more,” said Thivalapill. Many patients may be afraid that community healthcare workers may gossip about their health status, or that they may be seen getting a delivery of medication.
Today, Thivalapill is a graduate student at the T.H. Chan School of Public Health at Harvard University, in Cambridge, MA, where he is studying global health and concentrating in infectious disease epidemiology. He is particularly interested in designing and implementing global health interventions to help people who are burdened by infectious diseases, particularly in areas ravaged by conflict. “The more displaced people are, the more difficult it is for them to access medical care,” said Thivalapill.
As a scientist champion of human rights, Thivalapill sees the vital difference having access to information can make in people’s lives, and he applauds the work that AAAS is doing to support the idea of having access to science as a human right. The right to the benefits of scientific progress was an issue that was first recognized internationally in the Universal Declaration of Human Rights in 1948 and later as Article 15 in the International Covenant on Economic, Social and Cultural Rights in 1966. AAAS has been working to support this concept. “AAAS has been instrumental in trying to operationalize this concept,” said Thivalapill.
One stark example of how lack of research and information can affect health is a project Thivalapill was involved in while in Uganda. There, Thivalapill was part of a study that looked into why people were not using mosquito bed nets despite the high rates of malaria. The researchers realized that people were given two bed nets for 10 people, which families then used in agricultural work (such as on chicken coops, for example). “People were prioritizing economic health over physical health,” said Thivalapill. Not conducting follow-up research to see whether a program is working or why it is or isn’t working — just distributing nets or medications or other aid and then leaving — can undermine whatever was implemented in the first place.
Considering how imperative access to research and information from science is, said Thivalapill, restricting access to scientific breakthroughs and research can be seen as restricting freedom of information and human rights.
Thanks to the efforts of scientists like Thivalapill, more people around the globe are likely to experience improved access to science, and the vital information that they’ll need to improve their health and their lives.