Unfortunately, hepatitis C is stigmatized, largely due to ignorance about the disease. One reason for the stigma is because hep C is potentially infectious. However, hep C isn’t transmitted as easily as some think. It isn’t passed by hugging, kissing or drinking out of the same glass. Generally, there has to be blood-to-blood contact with an infected person in order to get hep C. Nevertheless, people may be fearful that they can “catch” hep C from you. In some communities, people with hep C don’t disclose their status because they are afraid of being shunned. Fear and ignorance have cost people their jobs, friendships and relationships.

Another aspect of the stigma relates to hep C’s association with injection drug use. People and societies often lack compassion and understanding about injection drug use. Former injection drug users may feel haunted by their past and want to avoid this label. Active injection drug users carry the burden of having two stigmatized diseases, addiction and hepatitis C.

Stigma may also affect those who have never used injection drugs. Misinformed people sometimes assume that all people with hep C have used injection drugs, despite the many ways hepatitis C may be acquired. Those without a history of drug use do not want to be labeled as injection drug users.

The potentially damaging effects of stigma are described in Stigma: Hepatitis C and Drug Abuse, by Astone-Twerell, Strauss, and Munoz-Plaza. Some effects of stigma are “reduced self-esteem, diminished mental health, less access to medical care, and fear of disclosing a positive status.” Fear of disclosure may lead to reduced social support and reluctance by medical providers to care for HCV-positive patients. In particular, injection drug users have trouble accessing medical care and other human services.

For some, the stigma hurts more than hep C itself. However, although it may be hard to avoid stigma, there are ways to cope with it. Here are some suggestions:

  • Educate yourself and others. Inaccurate information can perpetuate stereotypes.
  • Get support. It helps to hang out with others who share similar experiences.
  • Join a patient advocacy group or local HCV task force. Take part in bringing about change.
  • Challenge stereotypes. If you do not like how media and marketers portray people with hepatitis C, let them know.
  • Take action. Make use of social media and other tools to change the political and social climates. Call or send letters, emails, tweets and faxes to legislators, policymakers and other agencies. May is Hepatitis Awareness Month, and an especially good time to get involved.
  • Confront stigma, even if you think that one person can’t make a difference. As Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

Last Revised: January 11, 2016