Start Taking Disease Stigma Seriously–Here's Why…
By Daniel E. Dawes, JD
Every year millions of people across America experience disparities in health status and health care, but few people recognize that stigma due to an illness or chronic disease plays a significant role in continuing and exacerbating these disparities. Simply stated, stigma negatively impacts an individual’s ability to reach her or his full health potential. While public awareness that stigmatization is one of the predominant barriers to effective screening is increasing, and treatment and care for individuals with stigmatized diseases such as Hepatitis C, HIV/AIDS, mental illness, lung cancer and others is improving, it is doing so at a very slow pace. This issue presents many challenges across the health system, and unless we address it in a meaningful and comprehensive manner, we will continue to see untold deaths, needless suffering, and billions of dollars in both direct and indirect costs to a health system that cannot sustain in the same manner for much longer.
Disease stigma often leads to an increased risk of being discriminated against in the health care system; a lower quality of care; avoidance or delay in seeking screenings and treatment; an increased unwillingness to disclose an illness; a reduction in support for patients battling stigmatized diseases; lower investments in research efforts to improve treatment or find a cure; and heightened illness- and disease-related stress. Anecdotal research suggests that disease stigma contributes to the absence of universal screenings and consequently the late detection of certain conditions and diseases in the very populations (i.e., women, racial and ethnic minorities, individuals who lack a medical home and/or health coverage, and individuals from the lower socioeconomic strata) that are at the highest risk.
Research Supports the Negative Impact
Additionally, current research suggests that as a direct result of these consequences, individuals battling stigmatized diseases suffer worse health outcomes and lower survival rates than those battling diseases that are not stigmatized. Sadly, those who are battling stigmatized diseases must also battle efforts to assign responsibility and blame for contracting the disease, and depending on the method a disease is contracted, the individuals are regarded as guilty (and, on some level deserving) or innocent (and, thus undeserving); The stigma impacts whether we see those people as victims or patients; as heroic or shameful.
Stigma is real. It is pervasive. It has a devastating impact and it must be appropriately addressed if we are ever to realize a health system that is accessible, equitable, and patient-centered. There is a critical need for “real talk” as it pertains to stigma and its impacts across the health advocacy community, the entire health care system, and upon those – at the local, state and federal level – charged with developing, supporting, and implementing health policies. Disease stigma affects how prevention, early screening, and research dollars to find cures for diseases are formulated, advocated (or not advocated for), and ultimately how those dollars are allocated.
Stigma leads to discriminatory behavior
Stigma is the first step that when, unchecked, leads to discriminatory behavior. Myriad studies exploring subconscious or implicit bias have shown that when people are made aware of their subconscious biases, then that awareness creates a teachable moment. That is when the window to effect change opens. That is why your advocacy and your ability to keep this conversation going is so important. Meaningful change will not happen until we are all aware of the detrimental impacts of stigma and consciously work to address them.
As our nation’s health care system reforms, stomping out stigma is a key factor to ensure our system transforms into one that preserves, protects and bolsters the health, wellness and life opportunities of all who access health care services. When individuals charged with drafting, revising and implementing care, treatment and screening recommendations succumb to the stigma associated with some conditions and diseases, the greater public health is poorly served. Disease stigma is a major, yet preventable cost driver in health care, contributing significantly to the increased costs that result from a lack of universal access to screenings, early detection, and late diagnoses in individuals battling stigmatized diseases and conditions.
So, what next? Given all that we know about the tremendous impact that stigma has on health equity, there are certainly actions that we can take now to reduce and eliminate stigma. First, we need to come together and urge the U.S. Department of Health and Human Services (HHS) to actively address disease stigma. Just as Congress has authorized the Institute of Medicine (now the National Academy of Medicine (NAM)) to produce landmark reports on critical health policy issues, which have pushed the needles in the right direction, they should authorize NAM to convene a study group and produce a report highlighting the issues impacting people who experience disease stigma. And just as HHS developed a department-wide strategy to eliminate health disparities, they should develop a department-wide strategy to eliminate disease stigma.
In addition, similar to how HHS measures and monitors health disparity trends, HHS should do more to evaluate efforts to reduce disease stigma not only in the health care system, but also among those charged with drafting and implementing health policies. When the U.S. Preventive Services Task Force gives an early screening method a favorable rating, then it should be followed by an enforceable plan for wide, consistent and affordable access to that screening method. Finally, research funding should not be held hostage to disease stigma! The time for that change is long overdue. It is unjust, unfair, and takes our entire public health system in the wrong direction.