Hepatitis C Statistics and Information: The Elephant in the Room
Statistics are used in the fight to end the hepatitis C epidemic and the opioid crisis; stats show the way certain things have been, most likely are right now and will reasonably end up if nothing is done. Besides laying a foundation for understanding a certain event or situation, statistics and information are neatly packaged inside national ad campaigns and marketing materials. They make their way from the boardrooms of government agencies, private and nonprofit organizations and pharmaceutical companies, to our televisions and smartphones.
Generally, these messages are factually accurate and straightforward. The intent is not to deceive; it is to inform and motivate. This is a great goal and necessary to raise awareness. However, it may be having the opposite effect, because what a statistic or fact represents isn’t always 100% reliable. The ugly side of well-meaning health campaigns or awareness efforts can show up subtly as internalized stigma, a self-defeating mentality and result in further closing off marginalized populations through something called “othering.” Simply put, othering is a way we protect ourselves by separating those around us into groups. We do this in a lot of ways but the outcomes are what I’m focused on now.
The example I often use is to think about our cultural mindset during the early stages of the AIDS epidemic. If you were a gay male, you were going to get AIDS and die. We know today that isn’t true. There are things we all do that can place us at greater risk to contract HIV, but simply being a certain sexual orientation does not mean you are destined to get a life-threatening virus. If you take steps to protect yourself and engage in safer sex you can lower your risk. You also can get HIV if you are a straight male or female, white or black, rich or poor, etc. Although this is common sense, it’s important to cover this briefly so we can understand how it relates to the way we view hepatitis C today. Because in a lot of ways we see it in much the same way.
The following statistic is often used when talking about hepatitis C, “85% of people who inject drugs will
get hepatitis C at some point in their life.” Fact. Done. Let’s move on. Except no. How many of you reading
this have had someone close to you, someone, you’ve worked with say, “What’s the point, I’m just going to
get it anyway.” The problem with statistics is they are two-dimensional figures trying to represent three-dimensional objects and relationships. The depth and breadth of what they represent isn’t easily
translatable. And because of this, how they are interpreted and what they can be used for is flexible.
The dangers of misusing, or representing statistics and information are plentiful, but the greatest danger
is how they can affect the way we think about ourselves and those around us. For example, if 85% of
people who inject drugs get hepatitis C, and most of the ads and information I’m seeing support that idea,
then what risk am I at if I don’t belong to that group? We’ve seen the negative affect of this in trying to
kick start the screening of baby boomers, or birth cohort testing, which includes anyone born between
1945-1965. Locally, many providers tell me when bringing up testing with patients, their reactions of
offense and dismissal are immediate, “I don’t use drugs, why do I need to worry.” And even when we do
increase and maximize the screening of baby boomers and people who inject drugs (PWID), we now
know that up to 25% of hepatitis C positives can be missed.
We focus on those two groups because baby boomers represent the biggest portion (prevalence) of
people who have hepatitis C, while PWID are getting it at the greatest rates (incidence). I’m not interested
in arguing the mathematical validity or accuracy of statistics, because if the research and methods are
sound then so too are the results. What I am concerned with is how that information creates a frame
through which we see ourselves and others. Health campaigns are crucial and beneficial to increasing
awareness, screening and treatment. They also have the potential to increase stigma and marginalization
in the public, as well as affect screening and treatment completion. How people see themselves and how
they seem to other people affects their motivation to improve their lives and health. According to a
research study published a couple of years ago, 30% of PWID will contract hepatitis C within the first 2
years of beginning injection drug use. The fact that many transmissions are linked to unsafe injecting or
sharing equipment is true. Yet, we must ask ourselves how many of those behaviors are possibly affected
by the belief that a statistic is their fate, so what’s the point?
Matthew Zielske is the Training Manager for the Hepatitis C Support Project’s Train-the-Trainer workshop. He has a Master’s in Communication with a focus on health communication and health literacy.
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