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Beyond the Liver

With the name hepatitis being solidly based in all things liver it is not so strange that the focus is mostly around issues about the liver.

There is no doubt about how the hepatitis c virus attacks our liver, and that it causes liver disease, which can progress quickly in some while taking decades in others.

What is less known is how having chronic hepatitis c can impact a number of systems and cause all sorts of conditions that diminish our quality of life. I have experienced some of those myself when I was sick before and after diagnosis.

This is not unique to my personal experience, as I have learned over the years.

In my work as an advocate I hear all about the liver and stages of fibrosis as the main determinant in assessing degree or status of a persons condition, before and after treatment. I suppose this is a way to measure and we are all about measures when it comes to disease progression and determining who should receive treatment first. Payers, or insurers-public or private- determine who is eligible for coverage based on their stage of fibrosis and for the most part it ranges from F2-F3 depending where you live, and whether there is any treatment option available at all.

I have been advised against any widespread screening based on availability of treatment. I have heard this for years now. Some still hold to this belief and as surprising as it may sound they are placed in the area of public health. Yes it is true, public health officials and policy makers denying screening as being sound for anyone outside of their definition of who has the right to know whether they are living with chronic hepatitis C. I question whether the rights of people were considered as part of the equation.

The argument they use is that we cannot afford to treat everyone so why would we test them.

Even if treatment is not available immediately to all people, don’t they have a right to know if they are living with HCV? There is a responsibility by public health agencies to support this approach in my view. There are things that people can do to slow the progression of liver disease as well as lessening extra-hepatic symptoms and conditions. We can make decisions about things like diet, alcohol use, and other activity that can impact our health.

There is also the issue of people being informed about prevention, or as some say “harm reduction”.
Prevention (harm reduction) is a sound approach to slowing new transmission of the virus, and only an informed population can make informed decisions.

In short, it is not just about the liver as I see it.

We are complicated and so is HCV. We are all unique and we are all affected in different ways despite sharing things like genotype or liver stage. Ultimately it is our decision that matters most when it comes to our health. It is my hope that we can be seen as more than a liver or a number designation.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.