The patient perspective
“As a patient who has lived with hepatitis C (HCV), been cured of the disease and suffers the after effects of treatment with an older therapy, the stigma surrounding hepatitis C is not that much different than HIV/AIDS in the ’80s. Stigma is derived from ignorance, as well as attitudes and beliefs that contribute to HCV patients not being cured while our suffering continues.
“A recent incident illustrates stigma by a health-care provider. A severe attack of peripheral neuropathy sent me to the emergency room. I informed the physician that I was an HCV survivor. He immediately denied me the pain medication I needed. I knew I was stigmatized based on the provider’s perception about me as a past intravenous drug user. The perception of living with addiction is one of the underlying negative attitudes that lead to stigma toward HCV patients’ access to treatment and care.
“A portion of the population carries the genetic markers that predisposes them to addiction. I can identify 17 consecutive generations of addicts in my family. While we stigmatize others, it is important to remember the addict’s illness is not just confined to that individual, but their entire circle of family and friends is profoundly impacted. By stigmatizing HCV, this nation perpetuates this disease by not addressing underlying problems head on.” —Victor Ferrari
The Hepatitis Foundation International (HFI) deems hepatitis a viral infection that can lead to cirrhosis, liver disease and liver cancer if not treated appropriately. More than 2.9 million people are living with chronic HCV in the United States.
Individuals who experience stigmatization are commonly alienated, devalued and blamed by others for contracting their illness. Hepatitis C is stigmatized similarly to other infectious diseases, because people fear they will become infected when they come into contact with an infected individual. While not spread easily, many people have little or no knowledge about the virus and how it is spread.
There is a strong association between hepatitis and intravenous drug use, as indicated by HFI Patient Ambassador Victor Ferrari, and addiction, an already stigmatized condition. The stigma associated with hepatitis can impact an individual’s overall health and mental health, leading to diminished mental well-being and reduced self-esteem. It also can result in family and friends taking inappropriate measures against the person with HCV and avoiding that person unnecessarily.
Because of stigma associated with HCV, individuals may not seek follow-up care and experience gaps in treatment adherence. Patients are afraid of being judged or denied service by medical professionals and are less likely to seek medical support.
Stigmas stem from a lack of information or fear of the unknown, and education is key to creating a stigma-free environment. Health professionals can eliminate stigma and create a positive environment free of judgment. These actions help replace fear, change negative views and offer patients hope and better health outcomes.
Ivonne Cameron is the chief executive officer of Hepatitis Foundation International, a 501(c) 3 non-profit dedicated to eradicate viral hepatitis for 550 million people globally. For additional information, visit Hepatitis Foundation International or call (800) 891-0707.