Stigma of Hepatitis C and
Lack of Awareness Stops Americans From Getting Tested and
-Landmark survey shows need to shatter myths surrounding
BETHESDA, MD (June 10, 2003) –
Americans’ misunderstanding of the potential dangers of
hepatitis C is causing many with risk factors to forgo testing
and treatment, according to a landmark survey commissioned by
the American Gastroenterological Association (AGA). HCV, a virus
that attacks the liver, infects four times as many Americans as
HIV and is expected to kill more Americans than HIV by the year
"Hepatitis C can be detected with a simple test, yet it is
estimated that the vast majority—70 percent—of four million
Americans infected with HCV do not know they have the disease,"
said Dr. Mitchell L. Shiffman, co-chair of AGA’s new hepatitis C
education effort and Chief of Hepatology, Virginia Commonwealth
University Health System.
Hepatitis C is a potentially life-threatening viral disease of
the liver transmitted through blood and blood products. Over
time, chronic infection can lead to cirrhosis, liver failure,
and liver cancer. The survey findings indicate the need for
increased awareness and education about hepatitis C, the most
common blood-borne disease in the US. While only about half of
the general public believes it is a public health threat, more
than 80 percent recognize HIV poses a serious threat. In
contrast, physicians and hepatitis C sufferers surveyed view HCV
as a threat on par with HIV.
The survey is part of AGA’s "Be Hep C S.M.A.R.T." (Shattering
Myths And Reinforcing Truths) campaign to educate the public and
healthcare providers about the prevention, diagnosis and
treatment of hepatitis C.
A Need to Reinforce Truths:
The survey of physicians, people with HCV and the public
revealed lack of awareness of the facts about HCV and some new
· HCV is spread through blood-to-blood contact – Many adult
Americans (32 percent) incorrectly think HCV can be spread
through fecal contaminated water or food; 42 percent of
Americans do not know that hepatitis C can be contracted through
any contact with infected blood.
· No vaccine for hepatitis C exists – Twenty percent of
Americans and 15 percent of hepatitis C sufferers believe there
is a vaccine for the disease.
A Need to Shatter Myths:
The stigma attached to hepatitis C is far less than those
infected think – Although 74 percent of hepatitis C sufferers
believe that most people think that the disease mostly afflicts
drug addicts and people with unhealthy lifestyles, only 30
percent of the public actually holds this belief. Only 12
percent of the general public believes that people like
themselves don’t get diseases like hepatitis C.
"Since my diagnosis with hepatitis C in 1999, I have been
dedicated to sharing my story and encouraging others to do the
same so that we can bring the attention to this disease that it
deserves," said David Marks, original Beach Boy and the official
Be Hep C S.M.A.R.T. campaign spokesperson. "Until people with
hepatitis C unite and speak up, this disease will remain a
A Need to Manage the Disease:
Hepatitis C is curable, not only treatable – While over half of
hepatitis C cases are cured with treatment, 34 percent of
Americans and 17 percent of hepatitis C sufferers are unaware
that prescription medications are available to treat the
disease. Only 24 percent of Americans, 24 percent of patients
and 15 percent of primary care physicians believe that available
treatments can cure some patients with the disease.
In contrast, 65 percent of gastroenterologists and hepatologists
say that hepatitis C can be cured in some patients.
"With the newest prescription treatment combination, at least 50
percent of patients have a sustained virological response.
Clinical research now suggests that this response, where the
virus can no longer be detected in the patient’s blood, is
permanent. I consider it to be a cure," said Dr. Michael Fried,
Be Hep C S.M.A.R.T. campaign co-chair and Director of Clinical
Hepatology, University of North Carolina Liver Program.
Side effects are the biggest hurdle in treatment – Of the
hepatitis C patients surveyed, 47 percent have taken
prescription therapy for the disease. When asked what they would
change about their medication if they could do so, 61 percent
said they would decrease the side effects. Of the patients who
received treatment, 21 percent did not complete treatment. The
reason given by 82 percent was because of side effects or a bad
reaction to the treatment. For the 53 percent of patients who
never received prescription treatment, 21 percent said concern
of side effects was one of the reasons.
"Patients believe that hepatitis C therapy is more difficult
than is actually the case as newer, more tolerable treatments
have come to market with fewer side effects," said Fried
Patients and physicians are not discussing hepatitis C risk
factors – Only 55 percent of primary care physicians routinely
inquire about risk factors in their patients and only 15 percent
of patients believe that they have any of the risk factors.
However, most people, 85 percent, say they are likely to seek
medical attention if they thought they had been exposed.
About the survey
This survey was conducted online by Harris Interactive®
for AGA in the United States between February 19 and March 5,
2003, among a nationwide cross-section of adults ages 18 and
older. Sample included 493 infected with HCV; 1,226 not infected
with the condition and 415 physicians (198 primary care
physicians and 217 specialists). Figures for age, sex, race,
education and number of adults in the household were weighted
where necessary to bring them into line with their actual
proportions in the population. "Propensity score" weighting was
also used to adjust for respondents' propensity to be online.
With probability samples of this size, one could say with 95
percent certainty that the results have a statistical precision
of plus or minus 3 percentage points (for the non-infected
general public sample), plus or minus 4 percentage points (for
the HCV-infected sample), and plus or minus 7 percentage points
(for each physician sample) of what they would be if the entire
population had been polled with complete accuracy. This online
sample was not a probability sample.
Survey results are available on the AGA Web site,
The AGA Be Hep C S.M.A.R.T. campaign is funded through an
unrestricted educational grant from Roche.
Founded in 1897, the American Gastroenterological Association is
one of the oldest medical specialty societies in the United
States. Its members include physicians and scientists who
research, diagnose, and treat disorders of the gastrointestinal
tract and liver. Representing almost 14,000 gastroenterologists
worldwide, the AGA serves as an advocate for its members and
their patients, supports gastroenterology practice and
scientific needs, and promotes the discovery, dissemination, and
application of new knowledge, leading to the prevention,
treatment, and cure of digestive and liver diseases. AGA does
not endorse or favor any specific product or company. Trade,
proprietary, or company names appearing in this document are
used only because they are considered necessary in the context
of the information provided.
About Harris Interactive
is a worldwide market research and consulting firm best known
for The Harris Poll,
and for pioneering the Internet method to conduct scientifically
accurate market research. Headquartered in Rochester, New York,
U.S.A., Harris Interactive combines proprietary methodologies
and technology with expertise in predictive, custom and
strategic research. The Company conducts international research
through wholly owned subsidiaries—London-based HI Europe
and Tokyo-based Harris Interactive Japan—as well as through the
Harris Interactive Global Network of local market- and
opinion-research firms, and various U.S. offices.