Stigma of Hepatitis C and Lack of Awareness Stops Americans From Getting Tested and Treated


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). 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 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 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 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 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.

The survey of physicians, people with HCV and the public revealed lack of awareness of the facts about HCV and some new truths:

- HCV is spread through blood-to-blood contact - Many adult Americans (32 per cent) incorrectly think HCV 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 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 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 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.

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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