Hepatitis C:

A Medical — and Social — Diagnosis

Perceived stigma associated with HCV infection can affect self-esteem and quality of life.

Stigmatization may cause people with the hepatitis C virus (HCV) to avoid testing, treatment and care.

Liver

Chronic hepatitis C is a serious liver disease caused by the hepatitis C virus (HCV) that, over time, can cause liver damage and cirrhosis (scarring of the liver). One of the challenges of managing chronic hepatitis C is that people with HCV often have no symptoms — and can live with an infection for decades without feeling sick.

Stigma

HCV patients may experience another defining characteristic of this disease — stigma. Stigmatization has been identified by researchers as one of the most significant issues facing people who are hepatitis C positive and is seen by many as a barrier to HCV care.

Question Mark

So, Why The Stigmatization?

The stigma of a hepatitis C diagnosis may stem from its association with injection drug use. However, before 1992, HCV was also commonly spread through blood transfusions and organ transplants before widespread screening of the blood supply began in the U.S. HCV is also potentially infectious. Although not easily transmitted, people are nevertheless fearful and may shun those who have the disease; and, furthermore, some people don’t like to be around people who are "sick." Stigma impacts HCV-infected people regardless of how they actually contracted the virus, whether through contaminated blood products, the reuse of unsterilized equipment, an accidental needle prick, or the past use of injection drugs.

The Impact of Stigmatization

These norms, behaviors, and beliefs surrounding hepatitis C infection can lead to alienation from family and friends, as well as to discrimination (perceived or real) in health services and workplaces.

Indeed, many chronic hepatitis C patients report feelings of stigmatization and social isolation from their friends, family, and coworkers.

“We’ve talked to HCV infected grandmothers whose own children won’t allow them to play with their grandchildren because they’re afraid of some sort of transmission,” reports Michael Ninburg, executive director of the Hepatitis Education Project, a Seattle-based group founded in 1993 to provide education, support, and advocacy for those living with hepatitis.

A recently diagnosed patient who works with Michael’s group echoed this sentiment. “I'm super outgoing. I talk about every feeling I have to my friends, just about anybody, and my diagnosis was something I could not talk about,” he said. “I knew that I had to do something about it, but I was ashamed.”

We've worked with patients who haven’t told their families about their hepatitis C diagnosis.

– Michael Ninburg

Getting the support HCV patients need

This stigma may make patients fear disclosure and may lead to reduced social support and barriers to medical care. This, in turn, has the potential to hinder the growing chronic hepatitis C epidemic.

Ninburg

We need a real public health effort to tackle this stigma, says Ninburg. We need governments and communities to step up and make people aware that they may be at risk. If they are at risk, they need to address it.

– Michael Ninburg
Executive Director of the Hepatitis Education Project

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