Professor Alicia Suarez
November 10, 2009
Hepatitis C virus (HCV) is the most common blood-borne infection in the United States and worldwide – surpassing even HIV/AIDS – yet most people know little about it. Assistant Professor of Sociology Alicia E. Suarez, who studies the affects of stigma on those who have HCV, offers an explanation for this divide.
"HCV is transmitted blood to blood," Suarez explains. "That means it mainly affects intravenous drug users. Hemophiliacs and people who receive blood transfusions are affected as well, but that's very unlikely now that blood is screened. Suffice it to say that HCV is not culturally visible."
The disease itself can be symptomatically invisible, as well. Many people don't know they've been infected until they're diagnosed with some sort of liver disease, such as cirrhosis.
"As many hepatologists will say, most people will die with HCV, not from it," Suarez says.
Suarez's area of specialty is sociology of health and illness – research that looks at illness experience. In the United States, that experience is typically related to ever-increasing life spans.
"Disease in our society is characterized by chronic illness," Suarez says. "One hundred years ago – or in less-developed countries today – it might have been more characterized by what we would call acute illness, which either goes away or kills you quickly. Instead, we live a long time and often with some sort of illness."
Whereas a biologist might examine how a pathogen affects organ tissue, Suarez studies factors external to the disease that can affect a person's quality of life. While these approaches to illness are different, she argues that they are complementary.
"Taking a look at medicine through a sociological lens provides vast insight into how we treat patients and understand illness, disease and inequalities in health," she says. "Medical schools are recognizing this and requiring students to take courses that look at the social and cultural aspects of health and illness."
To understand a disease, Suarez says you need to be able to put a face with it.
"You have to show students the big picture with statistics, but you also need to personalize it," she says. "I invited people who are HIV-positive to come speak to a class. It's not just a statistic anymore – it's this person who lives in Indianapolis who's sitting with us and talking about his illness. Numbers affect a person's perception, but giving a voice to the disease gives students a way to relate other than the behavior associated with the disease."
Suarez's ultimate goal is to reduce stigma associated with HCV, both among the public and medical community, so that people who are infected with it are more likely to seek and receive help.
"People think that if they tell someone they have HCV, they'll risk stigmatization," she says. "But if they don't tell, they won't have access to social support. There's a lot of research that shows that having support is very important for people who are ill. It's a Catch-22."
Suarez conducted research on this phenomenon in the American South that revealed the cultural complexity of HCV. She found that a respondent's race could greatly affect how he or she experienced the disease. In general, African-American respondents were less willing to disclose their illness to others, while white respondents reported significantly higher feelings of stigmatization. She has shared her findings at conferences across the country, including ones sponsored by the American Liver Foundation and Washington State Department of Health. She hopes that her work will both help fight the spread of HCV and improve the quality of life for those who suffer from it.
"All sick people deserve access to treatment and knowledge about their illness," Suarez says. "How people get a disease doesn't mean they should be treated with any less dignity."Back