Stigma of Hepatitis C and Lack of Awareness Stops Americans From Getting
Tested and Treated
- Landmark survey shows need to shatter myths surrounding hepatitis C -
BETHESDA, Md., June 10 /PRNewswire/ -- 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). Hepatitis C Virus, 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 2010.
"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 Hepatitis C Virus
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 Hepatitis C Virus 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 Hepatitis C Virus and the public revealed lack of
awareness of the facts about Hepatitis C Virus and some new truths:
* Hepatitis C Virus is spread through blood-to-blood contact -- Many adult Americans
(32 percent) incorrectly think Hepatitis C Virus 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
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 silent
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
Hepatitis C Virus; 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
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 Hepatitis C Virus-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.
The AGA Be Hep C S.M.A.R.T. campaign is funded through an unrestricted
educational grant from Roche.