Smoke and Mirrors

Smoke and mirrors is a phrase used to indicate deception, and maybe just a little too old school for some, but succinctly captures (for me) the history and response to hep C. Were there purposeful acts that we can point to, or was it simply easy to ignore because of the burden of the stigma it carries? A good question, and to be honest there is no defining moment that I can point to, but a series of points in time (history).

The stories I hear from people in their real-life experience in dealing with medical care systems might surprise some of you, and many of you would say ‘that happened to me’.

Frustrating System Failures

Has there been a series of conspiracies or just one overarching vision to frustrate the process of testing and linking people to care? I am not so much of a conspiracy theorist, but a recurring and system-wide approach can sure look a lot like a conspiracy even in the absence of a real one. The shared views and perceptions of those people tasked with making the big decisions that impact the lives of large populations of people if based in bad science or stigma and discrimination has the same consequence.

There is plenty of language that sounds right to us, but upon scratching the surface we see it is flawed. These are the kinds of things that lead to policy and when it becomes enshrined as policy it is made to be even more damaging if it institutionalizes bad practices. One could argue the case for any action or non-action, and even support their case with evidence to support why or why not to address the issues at hand. I know this is a bit esoteric for some but in general, it is to me what has happened with hep C over a period of many years, long before I became involved/diagnosed.

Stigma or Indifference?

It is not my intention to point my finger and lecture on the mistakes and missed opportunities in the past, but it has struck me from almost day one that hep C was an orphan disease that was never taken seriously until there were new drugs like we see now. Was it the belief and widely held myth that because hep C was mostly benign and slow in how it progressed or was that just an instrument to avoid and ignore a population who are convenient to abandon? Strong words perhaps, but honestly I am at a loss to understand any reason why such a large group of people would be pushed to the margins based on their diagnosis or was it that they were already at the margins and it was such an easy play to make? I think both apply, as we know by the data.

My fellow advocates all over know what I am talking about. It is no secret, or at least for those of us who have watched these things over time can see, this is one of the worst examples of how to respond to a public health disaster on a scale much larger than most people know, with twice as many people dying from hep C than are from HIV, and 59 other infectious diseases combined, as reported by The Centers for Disease Control.1 They acknowledge that the incidence of death from hep C is underreported, despite this shocking number.

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