Stigma of Hepatitis C and Lack of
Awareness Stops Americans From Getting Tested and Treated
Posted on: 07/09/2003
http://www.infectioncontroltoday.com/
BETHESDA, Md. -- 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 4 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 for 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 per cent recognise 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.
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 per cent) incorrectly think Hepatitis C Virus can be spread through faecal
contaminated water or food; 42 per cent of Americans do not know that
hepatitis C can be contracted through any contact with infected blood.
- No vaccine for hepatitis C exists - Twenty per cent of Americans
and 15 per cent of hepatitis C sufferers believe there is a vaccine for
the disease.
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 epidemic."
- Hepatitis C is curable, not only treatable -- While more than 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 per cent 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.
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 online.
With probability samples of this size, one could say with 95 per cent
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.
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.
Source: American Gastroenterological Association
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