Equity and Hepatitis C
Some will see equity as equality and it is certainly a cousin of equality but not quite the same thing. Equity is about justness and fairness and balance which can mean something different to different people, but I am addressing it in the context of living with or being at risk for hep C. Access to care and treatment is at the core of what I want to talk about, but not exclusively.
It is not the same for everyone and there are a lot of ways that make it that way. The obvious issue is socio-economic status and there is no doubt in my mind that this plays a large part. How we access care, which some of us take for granted, can be down to one’s geographic location, which is not an easy thing to overcome if you live in an isolated community or small town with few if any medical or other support resources available. How you receive healthcare or whether you have any access at all in a real and practical way varies greatly depending on many factors such as mobility and a person’s ability to sustain a safe and stable living environment.
Here comes stigma again and it does weave its way through my writing because I hear about it from people almost daily. Sometimes it is blatant while frequently it is not so in-your-face as that. What I hear varies but the theme is the same. People are left feeling as if they are stigmatized even when they are not openly discriminated against because the wrong-held beliefs about hep C persist and are felt by nearly all who are diagnosed, with few exceptions in my experience.
How can we have equity in an environment with such deep misunderstanding about hepatitis C? It is a good question and one I ask myself regularly. It begs a solution, not just mentioning. We have seen some division within the various community representatives who assert one set of issues over another, or that one group of people are more in need of attention than another. This is not at all remarkable or harmful to me because there are so many issues and different populations that need to be addressed, and all of them need advocates who will best represents their needs.
When I am asked what the single most important issue is, and I am asked that frequently, I struggle for a good answer other than improving equity. In a perfect world what would equity look like? To me, it would mean that we all have access to the same level of care and access to the best possible treatments and necessary resources. The resources will take a different form depending on what is an appropriate, and best support the individual or group. This is happening in some places even now, and I salute those who are engaged in this work. It is not a widespread approach and is not something we see universally available for people living with or at risk for HCV. I am not suggesting that we need an entire overhaul of how healthcare is delivered, but there is no question that people who are diagnosed with HCV are not receiving equitable linkage to care and all that care represents.
In community, we have been focused on treatment and cure for years. Access to treatment remains a huge issue without question, but we also know there are other areas where we need to be seeing improvements. As we move forward we will continue to develop better supports, hopefully with the encouragement and support from others who join in our struggle. As long as we remain at the table and part of the dialogue I am hopeful we will see a more equitable environment for all people living with or at risk for HCV.