More Harm Than Good: Negative Healthcare Experiences
When we hear about “harm reduction”, it is used in the context of safety and prevention, and being infected with disease like HCV (hep C), HIV, or sexually transmitted infections. Most people understand harm reduction as it relates to safe sex, and some have heard about harm-reduction for drug use (such as not sharing needles, straws for snorting, or other drug items). Harm reduction programs vary from jurisdiction to jurisdiction, but in my work in hep C, it is usually about safer drug use, with a smattering of warnings about sharing razors, grooming implements, etc.
Prevention is a good thing, and despite the data and the evidence to support its merits, we still see resistance to harm reduction programs. Often, harm reduction is characterized (wrongly in my view) as “facilitating addiction”, and is therefore painted as morally wrong. I am not here to fight that battle, and no matter what your opinions are on the subject, it’s not my focus today. Instead, it is my intention to raise a question about other harms that hep C community members experience when seeking care from the medical field.
Stigma is the most obvious harm that too many people experience when dealing with uninformed or callous healthcare providers or service providers who make judgements about us. This is not to say that we should assume all healthcare or service providers fit into this category, because I know many professionals who treat patients fairly, and who would be just as unhappy as we are when it happens to us. However, some providers do harm by further stigmatizing or judging those with hepatitis C.
There exists many points at which there can be harm to people who are living with hep C, throughout treatment, and even after care, when treatment is finished. The initial diagnosis is often one of the most traumatic occasions, and for many, this is when sensitivity is at it’s highest. Some experience shock, with fear or resignation being common feelings. If not appropriately handled by the care provider, it makes the trauma worse, resulting in a point-of-care harm.
Care is a big word in my vocabulary. It encompasses a full range of things and includes more than treatment. Some people refer to the continuum of care, and I hear about the cascade of care, but these are models defined by the people who understand that care goes beyond access to treatment. According to the social determinants of health, marginalized people in society face tremendous barriers and stigma around health- another type of harm. This is a great harm to already disadvantaged groups, who often have few resources in terms of shelter, food, and the things that most of us take for granted.
I am not suggesting that marginalized populations are the only ones who experience these point-of care-harms. Others with more or better access to services can also be affected, just not as severely. If you have known what it is like to have low self-esteem and seemingly few options, or feelings of hopelessness, then you also know what this form of harm is like.
So, how do we reduce harm?
Unlike some things, solutions to these kinds of stigma-based and point-of-care harms are not easy or straightforward. What will change these systemic harms are awareness, education, and an effort to have the conversation with healthcare and service providers. After all, care is a big word, and what we all seek is dignity and a fair and respectful response from those who are meant to provide care to us. Isn’t that what it means, in the healthcare profession, to “first, do no harm”?
Editor’s Note: Are you afraid to talk about your hepatitis C? Some people want to learn more about hep C, but also want to keep their diagnosis private. At HepatitisC.net, there are ways to get information and connect with others, without revealing your identity. Click here to learn more about how to talk about hep C anonymously.