Although science aims to understand biological processes, which have implications in designing therapeutics and/or treatments, have you ever stopped to consider why a particular topic is chosen to be researched over another? Or, what topics are deemed important by funding agencies? Activists claim that only 10 percent of global health research is devoted to conditions that account for 90 percent of the global disease burden. In other words, we as scientists are not studying the diseases that affect the majority of the world as much as we study those that affect the West. Furthermore, it is argued that virtually all diseases prevalent in low-income countries are neglected, and that pharmaceuticals choose not to invest research and development into these areas.
In high-income countries, the WHO reports that the highest proportion of deaths are caused by cardiovascular diseases, Alzheimer’s/dementia, stroke, trachea, bronchus & lung cancers, pulmonary diseases, respiratory infections, colorectal cancers, kidney diseases, hypertensive heart disease, and diabetes. In low-income countries, the WHO determines the leading causes of death differ. Instead, the highest proportion of deaths are caused by cardiovascular diseases, stroke, neonatal conditions, pulmonary diseases, respiratory infections, diarrhoeal diseases, tuberculosis, liver cirrhosis, diabetes and road injury. Interestingly, the leading causes of death do not always translate into which research areas are funded. According to a 2019 report by the NIH, the majority of annual funding went into clinical research projects, namely those related to HIV/AIDS vaccine research, as well as precision medicine related to discovering cancer biomarkers and infectious diseases. After clinical research projects, the top funding dollars went to research on genetics, prevention, neuroscience, biotechnology, brain disorders and cancer. Under the category of “prevention”, the top funded projects were in relation to genetic screening and, again, HIV vaccines.
So why is it that research dollars are not following public health impact, and funding research focused on the diseases that cause the most harm? It is here that we have to consider social inequalities and determinants as they relate to disease burden. Social factors, such as education, employment status, income level, gender, and ethnicity all contribute to the health of an individual. For example, Black and Indigenous communities have been disproportionately affected by the COVID-19 pandemic. Furthermore, Indigenous communities in Canada have suffered immense health burden due to colonialism. Namely, Indigenous Canadians face health inequities such as chronic illness, food insecurity, and mental health crises.
Social Determinants of Health
As there are clear social determinants of health, are there also social determinants of health research? In an article published in the Washington Post, Claiborne Johnston, dean of the Dell Medical School in Austin, Texas remarked,
The thing I found fascinating, and this still appears to be the case, is we tend to underfund things where we blame the victim.
Take chronic obstructive pulmonary disease, also known as emphysema. It received $118 million in funding, but is the third leading cause of death in the U.S. The people who get that disease are overwhelmingly smokers. Perhaps since the solution seems clear and traditional — stop smoking — there isn’t research done on new interventions, despite the toll the disease takes.
Likewise, afflictions like depression and liver disease from drinking, are part of a “societal cluster” that have been underfunded compared to the threat they represent.
Although disease research funding does not match with health burden on a national level, it can be even more imbalanced on an international scale.
Neglected Tropical Diseases
The WHO published a report in 2010 which detailed the neglected tropical diseases of the world. The WHO estimates that diseases associated with poverty account for 45 percent of the disease burden in the poorest countries. The diseases in this category include viruses, bacteria-induced illnesses; respiratory infections (caused by burning biomass fuels and low-grade coal in poorly ventilated areas); diarrhea-associated diseases (caused by poor sanitation); and others. These diseases are in contrast to ‘the big three’, tuberculosis, malaria and HIV/AIDS. The big three receive adequate funding, and thus other tropical diseases are often overshadowed.
In a review article published in the journal EMBO reports, author Carlos Morel argues that infectious diseases affect poor and marginalized peoples disproportionally. From a public-health point of view, three key factors contribute to this burden: failure to use existing tools effectively; inadequate, failing or non-existent tools; and insufficient knowledge of the disease.
Neglected tropical diseases are estimated to affect about half the world’s population in some capacity. Thus, it is assumed that we might expect their prevalence to be reflected in research agendas. However, because the diseases, their vectors, and the social and economic conditions that allow for their transmission are most prevalent among the poorest populations in the world, often individuals who have experience with neglected tropical diseases are those who have no voice in setting research agendas or public health priorities. With large developments in technology, it is surprising there has been little investment into neglected tropical diseases. But they are low priority and largely ignored: the diseases occur in countries that lack the human, systems, and economic resources to tackle these issues, and, unfortunately, because there is no possibility of returns on the investment required in the biotechnology centers of the world, there is also little incentive for scientists and pharmaceutical industries to take up these challenges.
Neglected tropical diseases are also often associated with some kind of social stigma, making their treatment more complex. Disease control can be greatly affected by social stigma, as it decreases help-seeking and treatment adherence by individuals who are afflicted. Newer disease control programs have begun to integrate stigma mitigation into their health care programs. In India, the leprosy program prioritized the message that “leprosy is curable, not hereditary” in order to inspire optimism in highly affected communities. The goal was to make leprosy a disease “like any other”, so as to reduce stigma. At the same time, medical resources available in the area were optimized in order to fulfill the curable promise made.
In order to address neglected tropical diseases, and disease funding outcomes, we must also address societal impacts on health. Individual health outcomes often result from societal factors such as class and race, whereas diseases can go unaddressed due to social stigma. Researchers have a role to play in health outcomes as well. We must all address our underlying biases when we choose to research what we do.
1. Bhutta, Z. A., Sommerfeld, J., Lassi, Z. S., Salam, R. A. & Das, J. K. Global burden, distribution, and interventions for infectious diseases of poverty. Infect. Dis. Poverty 3, 21 (2014).
2. Braveman, P. & Gottlieb, L. The Social Determinants of Health: It’s Time to Consider the Causes of the Causes. Public Health Rep. 129, 19–31 (2014).
3. Johnson, C. Y. Why the diseases that cause the most harm don’t always get the most research money. Washington Post.
4. Kealey, A. & Smith, R. Neglected tropical diseases: infection, modeling, and control. J. Health Care Poor Underserved 21, 53–69 (2010).
5. Manderson, L. Neglected Diseases of Poverty. Med. Anthropol. 31, 283–286 (2012).
6. Morel, C. M. Neglected diseases: under-funded research and inadequate health interventions. EMBO Rep. 4, S35–S38 (2003).
7. Weiss, M. G. Stigma and the social burden of neglected tropical diseases. PLoS Negl. Trop. Dis. 2, e237 (2008).
8. Control of Neglected Tropical Diseases. https://www.who.int/teams/maternal-newborn-child-adolescent-health-and-ageing/maternal-health/about/control-of-neglected-tropical-diseases.
9. Prioritizing diseases for research and development in emergency contexts. https://www.who.int/activities/prioritizing-diseases-for-research-and-development-in-emergency-contexts.
10. RePORT. https://report.nih.gov/funding/categorical-spending#/.
11. The top 10 causes of death. https://www.who.int/news-room/fact-sheets/detail/the-top-10-causes-of-death.
12. Bambra, C., Riordan, R., Ford, J. & Matthews, F. The COVID-19 pandemic and health inequalities. J. Epidemiol. Community Health 74, 964–968 (2020).
13. Kim, P. J. Social Determinants of Health Inequities in Indigenous Canadians Through a Life Course Approach to Colonialism and the Residential School System. Health Equity 3, 378–381 (2019).