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EASL 2015: Survey Shows Half of People with Hepatitis B or C Experience Discrimination


A majority of people with hepatitis B or C tell family, friends, and sometimes work colleagues about their infection, but this often leads to discrimination including avoiding physical contact, not being invited to social events, and even loss of employment, according to study of American and European patients presented at the European Association for the Study of the Liver (EASL) 50th International Liver Congress last month in Vienna.

Stigma and discrimination can affect the quality of life of people with viral hepatitis, but few studies have evaluated the degree to which these occur and under what circumstances.

Carlos Varaldo from Grupo Otimismo de Apoio a Portadores de Hepatite in Rio de Janeiro and colleagues used the online SurveyMonkey system to administer a 12-item questionnaire asking 1217 people with hepatitis B or C in the U.S. and Europe about their experiences with stigma and discrimination.

Overall, 39% of respondents said that they experienced "some degree of rejection in the face of illness" and 34% of people "do not show solidarity and understanding."

"The results are extremely important because they allow us to identify the situations and population segments where discriminatory behavior and stigma are more frequent, enabling the design of strategies and action plans to fight these adverse situations that much impair the quality of life of those infected with viral hepatitis," the researchers concluded.

Below is an edited excerpt from an EASL press releasesummarizing the study findings.

New Survey Shows that Half of People with Hepatitis Suffer from Discrimination

Findings reveal the extent to which stigma and discrimination affect those living with viral hepatitis

April 23, 2015 -- Vienna, Austria -- As many as half of people infected with viral hepatitis have suffered discrimination and one-quarter admit that family members have avoided physical contact with them after finding out they had the infection. A shocking patient survey presented at The International Liver Congress 2015 has shown the devastating impact the infection has on their daily lives.

Research conducted with the Ministry of Health in Brazil questioned 1,217 people infected with hepatitis B or C in Europe and America using an online survey tool. The aim of the research was to find out, from those infected, when and with what intensity stigma and discrimination affect their quality of life.

The survey revealed that nearly half (49.6%) of those infected have suffered some kind of discrimination. Of the 94.1% who told their family they had the infection, a quarter (24.6%) said that relatives started to avoid physical contact. Furthermore, of the 73.7% who told friends about their condition, nearly half (46.9%) said they suffered discrimination and 23.8% said they were no longer invited to social events.

"Few studies have evaluated the circumstances and the degree to which stigma and discrimination are present for those living with viral hepatitis. This is one of the first studies that listens to the voice of the patient in order to find out from them the context and intensity of stigma and discrimination that they experience and how it affects their quality of life," said Carlos Varaldo, president of Grupo Otimismo Support Group for People Who Live with Hepatitis.

Of the 57.4% of those infected with viral hepatitis who told their partner about their condition, 33.3% said it affected their relationship and nearly half (42.7%) said it had an impact on their sex life.

Stigma and discrimination was also found to heavily impact the workplace. Of the 46.1% who told work colleagues, 10.1% lost their jobs. Self-image was affected in 55.8% of the cases and 41.4% said they felt ashamed of their condition.

The survey indicates that 70% of health professionals looked after sufferers properly; however, 24.6% of those health professionals have maintained a certain distance from the patient and 6.9% denied care to people infected with hepatitis, the survey revealed.

"This shocking survey highlights the true toll viral hepatitis can have on people’s lives. Not only are these people dealing with the illness, it is very evident that viral hepatitis infection still has a major stigma attached to it across all areas of people’s lives, including their family life and even the workplace," said Marcelo C. M. Naveira, Viral Hepatitis Coordination, Secretariat for Disease Surveillance Ministry of Health of Brazil.

"The stigma and discrimination faced by people living with hepatitis is all too often based on misunderstandings about the virus and its transmission. Not only is this damaging to people diagnosed with the disease, but it may also discourage others from getting tested and accessing treatment and support. There is a pressing need to educate the general public about hepatitis to erode this stigma and break down barriers to timely testing, treatment and care for those who need it," said Professor Markus Peck, Secretary General, European Association for the Study of the Liver.



CN Varaldo, J Costa, AR Pascom, et al. Stigma and Discrimination in Viral Hepatitis -- the Voice of the Patient. 2015 International Liver Congress: 50th Annual Meeting of the European Association for the Study of the Liver (EASL). Vienna, April 22-26, 2015. Abstract P1275.

Other Source

EASL. New survey shows that half of people with hepatitis suffer from discrimination. Press release. April 23, 2015.