By: Marcus Hopkins, Blogger
When I first transferred into a Chili’s restaurant in Kingsport, TN, I was told by my new General Manager that I “…need[ed] to keep quiet about my HIV+ status;” that “…we [couldn’t] afford to let word that there [was] someone with AIDS working at Chili’s, because they [wouldn’t] come to our restaurant.”
This was in the summer of 2008 – over twenty-seven years after the HIV epidemic was first reported upon in the New York Native, a gay newspaper at the time – and I was taken aback at how HIV/AIDS-related stigma still had such a firm grasp on this small Appalachian community. It was, in fact, the first time I’d ever had a manager specifically tell me that he wasn’t certain if he could continue to employ me if word got out, and the shock of his fear and ignorance (by which I mean his lack of knowledge), rather than leaving me feeling hurt and quieting me down, instead left me angry and ready to fight.
The reason I relate this anecdote is focus the topic not on the virus, itself, but on the stigmata associated with those who have the virus.
Stigma is, in fact, one of the greatest and least surmountable barriers to care that prevent people living with a virus to seek treatment. The fear that others in their community might come to associate them with the negative stereotypes that permeate those living with a specific illness is often so paralyzing that it can completely stymie any efforts to receive the treatment one needs to survive.
HIV isn’t the only virus with which stigmata are associated; HCV, the primary focus of HEAL Blog, carries with it a very serious stigma related to one of the highest risk groups for infection – Injection Drug Users.
The most common characteristic shared across all demographics in those who have contracted HCV is a history of injection drug use – primarily opiates. Excepting those born between 1945-1965, whose faced the additional risk of contracting the virus through unscreened blood transfusions, injection drug use is thought to be the largest contributing factor in the burgeoning HCV epidemic.
That stereotype is so prevalent, in fact, that several people with whom I’ve spoken in my current home state of West Virginia have told me that it is the main reason why they’ve either chosen not to get tested or, if they’ve tested HCV+, they have been very reluctant to answer any additional questions posed by the medical professionals charged with treating their illness.
This is one of the most difficult realities to overcome, when it comes to patients answering questionnaires – surveys and studies in which participants or patients are relied upon to self-report face the fact that many people, who faced with questions about high-risk behaviors, tend to lie in order to make themselves seem “better,” and to preserve what they believe to be their good reputations.
Perhaps, it’s because I am an habitual “over-sharer,” but I am, in fact, of the opposite mindset; to my way of thinking, and many medical professionals will agree with this sentiment, being 100% truthful with your physicians and researches consistently results to both a higher quality of care being provided, and to higher SVR (cure) rates for chronic, yet curable, illnesses.
When patients and participants are honest with those asking the tough questions, a bond of trust is formed between them, allowing for a more open dialogue to occur – a circumstance that can greatly improve the outcomes of any treatment endeavors.
I am, however, in the minority. Unlike most people, I am more than happy becoming the local “face” of HIV/AIDS; the resource to which people can turn whenever they come across something they may not fully understand.
Many people are simply not willing to face that level of public scrutiny, and frankly, who can blame them – their health conditions are no one else’s concern, but their doctors, nurses, and themselves. In order to receive treatment, one need not trumpet their condition all over the land. It is curious, however, that other chronic illnesses, such as Diabetes and various cancers, so easily elicit open communication and survivor mentalities.
With both HIV and HCV, the stigmata attached to the viruses is more commonly associated with high-risk and unsafe personal practices upon which society vocally frowns – something not so pervasive in terms of other chronic illnesses.
In order to better address this public health crisis, HCV educators, advocates, and healthcare providers are going to have to do a far better job of negotiating the shark infested waters of HCV-related stigma, with their students, legislators, clients, and patients. Without doing more work to remove those stigmata, much of the fight will be lost before it’s even begun to be fought.
Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.