Disease Destigmatization and the Future of Public Health
What will it take to overcome disease stigmas?
Stigma poses a direct threat to human health and wellbeing. Its harmful effects have been documented for a number of diseases and disorders—including infectious maladies like COVID-19 and HIV/AIDS, non-communicable conditions such as diabetes, dementia, and schizophrenia, and other health concerns ranging from obesity to opioid consumption to alcohol and tobacco use. Existing research shows that disease-related stigmas reduce people's willingness to seek out professional medical care, lower the quality of the diagnostic and therapeutic services they receive, facilitate disease transmission, and are a fundamental cause of health disparities and inequalities.
In other words, stigma is a significant barrier to health equity. In recognition of this, stigma-reduction efforts are becoming a more and more prominent part of public health work. Now seen as a key component of disease prevention efforts, destigmatization campaigns have been launched by governments and public health agencies all across the world.
Yet while there is unanimous agreement that stigma needs to be dismantled, attempts to reduce this have rarely produced the desired outcomes. As an historian of sexually-transmitted infections (STIs), I am most familiar with these shortcomings in the context of HIV/AIDS, where studies of destigmatization highlight an unsettling fact of this 40-year old pandemic: despite dramatic improvements in curative and preventive technologies, attempts to overturn AIDS' stigmatized status as a disease of the sexually immoral have yielded few tangible gains.
Unfortunately, this is true in other contexts as well. As a recent meta-review of disease destigmatization efforts concluded: *"Much is now understood about how stigma operates and induces harm in the context of different diseases and identities. Yet, progress has stalled in our collective ability to tackle stigma and its harmful consequences . Therefore, cross-disciplinary and cross-disease research and collaboration are urgently required to move forward."*
Medical humanities scholars have proposed a number of explanations for why stigma reduction efforts have not met with more success. Some point to the absence of clear methods for documenting a reduction in stigma, while others highlight the lack of universally applicable tools for evaluating stigma reduction efforts. Beyond these obvious deficiencies, there is a more basic problem: the lack of a clear theoretical framework for understanding the nature of stigma itself. A key reason so many destigmatization campaigns have struggled to dislodge the stigmas—the prejudices, fears, and stereotypes—associated with diseases like HIV/AIDS is that many of those involved in these campaigns are operating with an incomplete understanding of what stigma is.
Early Understandings of Stigma
Many of our contemporary ideas about stigma can be traced to the 1960s. Sociologist Erving Goffman's 1963 book Stigma: Notes on the Management of Spoiled Identity offered one of the earliest analyses of the topic, defining stigma as "the situation of the individual who is disqualified from full social acceptance" on account of physical, moral, or cultural attributes that are "deeply discrediting." Goffman identified stigma as a physical sign that was associated with some kind of defect or moral failing on the individual's part, which conferred a"discredited" social status. For Goffman, stigma arose from the negative meanings we assign to certain human characteristics, which marked individuals as deficient or undesirable in some way. And to this day, we acknowledge that stigma can result in social rejection, ostracization, and discrimination, and can force the stigmatized to develop strategies of identity management designed to "hide" or "conceal" all evidence of abnormality.
Goffman's book has served as the inspiration for countless stigma-reduction initiatives, but may also be the reason so many of these efforts failed.
Why is this? Most notably, because Goffman's account presents stigma largely as a byproduct of individual interactions, and as a problem of social norms. His work encourages anti-stigma campaigners to frame stigma as a psychological and behavioral problem on the part of the stigmatizer, and to treat it as a consequence of ignorance, mistaken ideas, or negative attitudes. In addition to being highly individualistic, in the Goffmanian way of thinking, stigma is an isolated phenomenon, and can be uprooted and corrected through education, empathy training, and benevolent social action between individuals.
Recent Work on Stigma
For a long time, this is how people studied stigma: they looked at it from a social-cognitive perspective, and approached it as a feature or characteristic of particular individuals. As a result, the broader social context in which stigmatized perceptions are grounded was ignored. More egregiously, the role that institutions play in fostering, disseminating, and perpetuating these perceptions was also ignored. Only recently have social scientists begun to grapple with the structural and environmental sources of stigma, and with the ways that governments, corporations, and other powerful institutions deploy stigma in service of political, economic, and ideological goals. Many of these institutional actors work to convince disempowered groups that they should accept their marginalized status, and seek to normalize existing social hierarchies. Whereas Goffman interpreted stigmatization as a bottom-up process, scholars today emphasize how stigma is often a form of "violence from above"—that is, something that is actively created to foster attitudes that blame certain groups of people for their illnesses, characterize classes of people as morally unworthy, and seek to limit these groups' access to healthcare resources.
In this new view, stigma is fundamentally about power, and the way it shapes processes of inclusion and exclusion. A more recent definition, by Ahmedani (2011), describes stigma as "stereotypes or negative views attributed to a person or groups of people when their characteristics or behaviors are viewed as different from or inferior to societal norms." Many other things can be stigmatized as well—including organizations, products, and of course, diseases. Stigma is a mark, a virtual scarlet letter, placed on any of these things to identify it as deviant and undesirable. From a functional perspective, we might say that the goal of stigmatization is twofold: (1) to discourage people from associating with the thing being stigmatized; (2) to "nudge" stigmatized individuals either toward a proscribed behavior or away from shared resources, in order to leave more for those who seek to exclude the stigmatized.
The Future of Anti-Stigma Work
Unfortunately, the idea that institutions are doing the "nudging" has yet to find its way into public health work. Destigmatization campaigns today are largely focused on educating the masses, with the goal of changing individual public perceptions of illness. While addressing these individual-level drivers of stigma is important, there is a limit to how much can be accomplished through a focus on the individual pathways that contribute to stigmatization. So too is it important to focus on the institutions that perpetuate bias by mobilizing vast resources to maintain stigma.
To confront this challenge head on, public health workers will need to focus on the structural and social drivers of disease stigma, and create strategies to combat those institutional and ideological forces that perpetuate inequality, disenfranchisement, and marginalization. They will have to expose power imbalances, and advocate for anti-discrimimnation policies and redistributive justice. There is a notable deficit in research on these topics; however the fields are ripe for research that can describe innovative new forms of social empowerment that challenge the status quo and enshrine broader access to preventive and curative medical services in public policy. Without these kinds of structural changes, stigma reduction campaigns will only amplify the very prejudices they seek to root out. Unpacking the structural elements of stigmatization offers a means for reducing health inequalities, promoting the wellbeing of all individuals and populations, reducing the burdens on society that come from an untreated class of individuals, and quite possibly creating a better society where all members can contribute to their fullest potential.
Photo by Ehimetalor Akhere Unuabona