The Oxford English Dictionary defines stigma as, “[a] mark of disgrace associated with a particular circumstance, quality or person,” and provides as synonyms “shame,” “dishonor,” and “humiliation.” Unlike outright discrimination, however, which is defined by and compensable in law, public shaming can be equally or more dangerous to the public well-being, yet remains largely unmeasured, unmonetized and, therefore, non-compensable.
There can be no real debate that HIV, despite its now being a manageable chronic illness and no longer a certain death sentence, still carries a stubborn, burdensome stigma. Some individuals with HIV also endure stigmas related to mental health status, homelessness, poverty, physical disability, drug and alcohol overuse, sex work, being formerly incarcerated, belonging to a marginalized community based on race, ethnicity, “lgbttqqipnb” (for those who favor a different set of consonants, please direct all complaints to the alphabet commission), immigration status, or religion.
These “stackable stigmas,” as I call them, provide significant barriers to ensuring not just the individual’s but also the public’s health. For example, a person who is transgender and believes (often rightfully) that when she seeks medical attention or counseling, she will be scorned, shamed, or simply face dangerous cultural incompetence, she is far less likely to have been tested for HIV and to access ongoing medical management that would allow her to remain HIV free (or to remain healthy if she has already acquired the virus), and therefore more likely to transmit the virus to others inadvertently.
Or imagine a teen-aged, gay African American living in a small town in the American South, in need of counseling for drug or alcohol overuse. Even if that young man could find public health services on his own (rather than use his parents’ insurance), he must still overcome real, justified, and paralyzing fear of being identified as gay in his home community. Being outed could lead to being disowned by family, friends, and faith community on the one hand, and even to violence, on the other. So, he continues to overuse drugs, which leads to his engaging in behaviors that place him at higher risk for acquiring HIV.
Imagine now a late-middle-aged, heterosexual white woman who is a wheelchair user. She repeatedly visits her doctor to seek treatment for a rash, sore throat, night sweats, and general flu-like symptoms. But, because she is a wheelchair user, the doctor assumes she is not sexually active and never tests her for HIV. Her HIV infection therefore may never be diagnosed, or diagnosed so late that the medical treatment that could have given her a normal, healthy life span, will now only be of marginal benefit.
These are but three examples of the hundreds of ways in which stigmas can negatively impact public health. Now that we finally have the medical tools to bring HIV to a close domestically, it is imperative to reduce and eventually eliminate stigma surrounding this medical condition as well as the stackable stigmas that often go with it.
I have called for a “re-branding” of HIV as a critical component of HIV stigma reduction. Unless we update the public’s understanding of the modern science of transmission reduction and elimination, and what it means to be a person living with HIV today, HIV stigma will remain unchallenged and unchanged. I therefore propose that a nationwide campaign be developed to re-brand HIV as “HIV 3.0” – the manageable chronic health condition that it is.
This re-branding is a critical first step, but it must be coupled with the development of a method for measuring and monetizing HIV stigma. We have made strides in reducing discrimination against those with HIV because we have the legal tools to measure, combat, and compensate for it. The same cannot be said of stigma. Building a legal construct for addressing stigma requires us to first define it, measure it, and monetize it.
One methodology for measuring HIV stigma is set out in the most recent update to the “National HIV/AIDS Strategy: Update to 2020 Indicator Supplement” (December 2016). The Update sets the goal of decreasing stigma among those diagnosed with HIV by at least 25% between 2015 and 2020. The Medical Monitoring Project survey (“stigma survey”) will be used to measure four areas:personalized stigma, disclosure concerns, negative self-image and perceived public attitudes about people with HIV. The survey also takes into account co-occurring conditions such as drug and alcohol over use and mental illness, among others, and the impact (stacking stigmas) that can accompany race, ethnicity, sexual orientation and gender identity. The results will be released by the CDC on an annual basis.
Having a scientifically accepted measure for HIV stigma is a critical first step is constructing a system where stigma itself, like its close cousin, discrimination, can become a compensable harm. It may also provide a template that can be used to measure other stigmas — especially those that, like HIV, involve a population of people attached on a regular basis to a medical or social service system. Such populations more readily generate enough data to have an impact.
Whether the legal system would support adding stigma as a compensable harm remains to be seen. In the meantime, the information that will be generated by the stigma survey over three years can be used to sculpt existing systems to reduce stigma by, for instance, making cultural competency a mandatory part of medical and social service education or a part of mandatory continuing education; providing increased online access to medical treatment and counseling for those concerned about confidentially in their home town; and ensuring confidentiality for young people accessing care through their parents insurance plans beginning at an agreed age.
On the cusp of bringing new HIV diagnoses to a close domestically, we cannot afford to take one step back. Not one. Re-branding this virus and eliminating the stigma surrounding it would be forceful and meaningful steps forward on this path to an AIDS-free generation.