By: Marcus Hopkins, Blogger
We, here at the HEAL Blog, are dedicated to the discussion of HCV, along with bringing knowledge about this potentially deadly, yet treatable/curable virus. I have often written about the new treatment regimens that have been or are being developed by various drug manufacturers, as well as covering the various political, policy, and stigma-related issues that face the Pro-HCV Treatment movement, and most importantly, those living with the disease.
One thing that I feel hasn’t been covered enough over the course of my posts has been the reality that holds us back from truly treating not only HCV, but virtually every chronic illness in America – Americans are largely uninformed about health issues and how those can impact their lives.
What brought this to mind, for me, was something my doctor said during my visit, this past week:
“I love the new HCV treatment regimen! It’s so much easier to tolerate than having to deal with the nightmare of Interferon treatments. My two biggest issues are getting people to remain compliant with their regimens, and with getting patients to event understand why Hep C should be important to them.”
This struck me as being so apt to my own experiences, that I felt like an idiot for not even beginning to think of it, beforehand: who would even think to think about HCV in the course of their daily lives?
My best friend had a similar experience, five years ago, when, while taking his final exam of his first year at Charleston Law in South Carolina, he found himself in excruciating pain. After he finished his exam, his then-girlfriend drove him to the hospital where he spent the next month coming to grips with the fact that he had been diagnosed with End-Stage Renal Failure.
He had always been a supportive friend, whenever it came to my own issues with AIDS, but he had never really been concerned with his own health – something that research has found to be consistent amongst people in their mid-twenties who are, by their own measures, ostensibly healthy.
After he was released from the hospital, he and I began to converse on a much more frequent basis, primarily because I was one of the only people in his life who really understood the toll that chronic illness can take on one’s life.
To be fair, his experiences mirrored in many ways my own. Prior to testing HIV+ in 2005, I had grown up in the midst of the AIDS crisis of the late-80s and early-90s, fully “understanding” the risks associated with unprotected sex and what contracting HIV could potentially mean for my life (at the time, the phrase “Death Sentence” was bandied about far too frequently). But, “understanding” an experience and “living” and experience are two wholly different perspectives.
Few people, if anyone, truly consider the risks posed by viruses that can lead to chronic illnesses. West Virginia, my home state, has the third-highest rate of HCV infection in the country (thought to be the result of two decades of opioid testing, prescription, and abuse in the central and southern parts of the state), and yet, even knowing that they have taken part in behaviors that put them at risk for contracting HCV, many of my doctor’s patients fail to see the importance of even getting screened.
The problem, I believe, is not that people are apathetic about HCV; it’s that, in their own minds’ idea of “the grand scheme of things,” their health falls outside of their personal Top Five Most Important Things list. It’s not just HCV, HIV, or other chronic conditions; it’s just “My Health,” in general, is not what most people pay attention to…until they have a scare, and wind up hospitalized.
This sort of nonchalance isn’t exclusive to the healthy – even those who have these chronic diseases can fall prey to complacency. Beyond simple complacency, there may be other factors informing a patient’s choice to remain ignorant to the importance of being screened and treated for various illnesses, one of which can be feeling simply overwhelmed.
My friend, of whom I spoke earlier, spoke to me, once, about how one of the reasons he’d grown closer to me, despite our distance (separated by two states), was that I was one of the few people in his life whom he felt didn’t make him feel badly about his condition; that, regardless of whether or not there was intent, his family, girlfriend, and other friends inadvertently made him feel badly about himself for not being able to live up to many of the standards and expectations he had set to them prior to becoming ill; that I was the one person to whom he could most relate, because I actually got that things were different for him, now, and didn’t require any explanation or adjustment in order to just go with his new flow.
For people who risk co-infection with HIV and HCV, many of these complications already exist in their lives. Along with age going up, as your income goes down, research indicates that you may be at greater risk for contracting HCV; as new research indicates that between 54%-62% of people living with HIV in America fall below 200% of the Federal Poverty Limit, the risk of co-infection is a very pressing matter.
What many doctors and advocates fail to take into consideration when speaking patients or proposing legislative/procedural solutions is the weight under which many patients already operate.
Despite the relative ease with which HIV (and even HCV) can now be treated, just the process of getting to, acquiring, and complying treatment can be incredibly overwhelming; this doesn’t even begin to take into account the other pressures that everyday life imposes upon a patient’s life – money, jobs, relationships (familial or relational), other medical conditions.
And this is one of my goals in working with CANN/aaa+ and HEAL Blog: gaining a better understanding of how to communicate important information with patients and in the educational sector while simultaneously empathizing with the realities of “real life” outside of HIV and HCV. This, I feel, will be the best way that I can reach out to people who most need my assistance.
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.