The Scarlet Letters

By: Marcus J. Hopkins, Blogger

One of the downsides of working in the field of Health Communication is that, whenever people find out that you have a lot of information about specific diseases, you will inevitably find yourself being peppered with questions at the least opportune moments. This is particularly true of co-workers whom, for whatever reason, seem to believe that I am some sort of medical authority on the subjects of HIV and Hepatitis C (HCV).

This was the case, several months ago, when a former co-worker of mine at GameStop informed me that her grandmother had been diagnosed with HCV, and how she didn’t know what to do to help her. She was, at the time, managing the store, which makes for an inopportune situation for discussing the finer points of treatment and access, but I still managed to give her the pertinent information, while hopefully allaying her belief that her grandmother had become infected at the elder care facility in which she had been residing.

I honestly don’t mind when people come to me for advice; I always make certain to let them know that I am not, in fact, a medical doctor, and as such, my advice should not be taken as prescriptive. That’s really what the field of Health Communication ends up entailing in the Appalachian Mountains – non-professional healthcare education and advice.

What makes Appalachia unique is the almost wholesale avoidance of healthcare providers its residents seem to employ. A region beset by geographic limitations when it comes to access, getting people to go to clinics and doctor’s offices is a Herculean effort, particularly when factoring in generations of distrust in authority of any type. Big Government, Big Business, Big Agra, Big Pharma – if it’s Big, it’s bad, and in the hearts and minds of many Appalachians, “Big” never has anything good in mind for them. Even within my own household, I find myself having to all but force my family members to go to see a doctor for even the most serious of ailments (most recently, continued chest pains over the course of a week, that resulted in a sixth heart attack the day after I left for meetings in D.C.).

This seemingly innate aversion to professional healthcare providers usually results in people asking for anecdotal and non-professional medical advice, a practice that rarely results to desirable outcomes, unless that advice is, “You should consult with a professional.” The problem with this is that it helps to reinforce preconceived notions about diseases like HIV and Hepatitis C that are simply false.

What’s sadder, still, is when people come to me terrified that they’ve contracted HIV or HCV, but are too afraid to go get tested, because they don’t want the stigma of being branded with AIDS or HCV. In a place where Big Authority is distrusted, the reality is that long-discarded stigmata continue to run rampant. In Appalachia, AIDS can still be spread through sharing silverware, and everyone with Hepatitis is hooked on Hillbilly Heroin (OxyContin).

The latter stigma of opioid abuse is further reinforced by the unfortunate reality of the method of transmission, particularly in the case of Scott County, Indiana. Though not, itself, an Appalachian state, Scott County abuts Kentucky and Ohio, both of which fall under that proviso (although the specific areas within those states may not). West Virginia, as I covered in my previous article, Cassandra in the Coal Mines, has a long, troubled history with opioid abuse, and with that abuse came a wave of Hepatitis infections (both B and C) that have left many people in the state afraid of having that stigma attached to them.

The stigma of being perceived to be “dirty” is a very real barrier to testing, treatment, and recovery. Now that HIV and HCV are popular in the news cycle, old stigmata are being resurrected, which may have the negative effect of making Appalachians, already suspicious of Big Healthcare, even less likely to get tested, regardless of how serious the treat to their lives and livelihoods.

What we need, now, in Appalachia, more so than men and women in suits at press conferences, are on-the-ground advocates, providers, and survivors. In rural areas, these types of approaches to healthcare often have the best net results. In my own experience, when people find out that I am living with AIDS, I frequently hear, “I would’ve never thought that you have AIDS! You look so healthy! What’s it like?”

These are the conversations that break down barriers; these are the stories that help convince people to go get tested. With HIV, we have those success stories, made especially poignant after a decade of well-publicized devastation; with HCV, although we have many passionate survivors as advocates, the advocacy and treatment communities are not quite as successful at lionizing these people, and helping to give HCV a national face.

One would assume that, in the post-HIV marketing world, pharmaceutical companies, government agencies, and advocacy groups, alike, would be clamoring to create an effective marketing campaign to raise awareness of HCV. This has yet to be the case. Instead, we are inundated by negative press about HCV – it’s too costly to treat; people are likely to be denied treatment; everyone with HCV is an injection drug user – this is the narrative to which we’ve been subjected.

As someone living only with HIV/AIDS, I am not the survivor that people need for the HCV message. I do, however, believe that we, as activists, advocates, providers, and payers, need to come up with a better information strategy for areas where stigmata still play a big role in preventing treatment.

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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.

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