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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

Hepatitis & Stigma


Main topics can be found within the left column; sub-topics and/or research reports can be found near the bottom of this page.  Thank you


For the care giver -- family member, spouse, lover or partner, friend, or volunteer buddy -- providing informal support and assistance to a patient throughout the course of the illness can be particularly stressful. Care giving involves a restructuring of care givers' personal and social lives, adversely affecting their outside employment, leading to feelings of fatigue, emotional and physical exhaustion, and imposing severe financial burdens. When an illness is long and extended, such as AIDS, care givers are at risk for becoming over-extended and depleting their physical, emotional, and financial resources. Consequently, patients may find that when their needs are greatest, they may have exhausted their informal resources for assistance, placing themselves at high risk for unmet needs. Read more

"Hepatitis C (Hepatitis C Virus) is a highly stigmatized disease. Revealing a diagnosis of Hepatitis C Virus can cause anxiety on a number of levels. The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one's life. Common feelings that people experience when considering disclosing their Hepatitis C Virus status include:

  • Fear of disclosure to family and friends as well as disclosure in the employment environment
  • Fear of seeking medical treatment and having Hepatitis C Virus documented in their medical records
  • Fear of denial of health and life insurance
  • Fear of infecting loved ones
  • Fear of dying
  • Fear of being viewed as a disease rather than as an individual
  • Fear of losing control over bodily functions and life
  • Fear of losing employment

Most of these issues can be helped by telling family, friends or business acquaintances and seeking either professional or peer support. However, people have to be careful who and what they tell people because of potential consequences in their personal and business life.


Document Name & Link to Document


File Size /Type
Attitudes About Hepatitis C Education Campaign for People Newly Diagnosed with Hepatitis C This report presents the results of five focus groups conducted by Market Street Research, Inc. among people recently diagnosed with hepatitis C, including people in recovery and those who contracted the virus through a blood transfusion or organ transplant 226 kb pdf

Burden of Infectious Disease among Inmates of and Releasees from US Correctional Facilities, 1997

Although some figures have been published, comprehensive statistics demonstrating the burden of infectious disease among inmates have been lacking.

119 kb pdf


Despite calls for a shift from hospital to community based care for people with HIV infection there has been some speculation about whether the facilities will actually be available. One central element of community care is informal care.


Changing the Stigma of and Levels of Awareness for Hepatitis and HIV/AIDS

Many people believe that there are just a few ways to acquire either of these diseases and that they occur due to specific life-style behaviors. This is why, in constructing the survey we attempted to reveal the possibility of other sources in lieu of basic blood-to-blood or sexual preferences


Conceptualizing Stigma

We define stigma as the co-occurrence of its components—labeling, stereotyping, separation, status loss, and discrimination—and further indicate that for stigmatization to occur, power must be exercised

213 kb pdf


The purpose of this descriptive correlational study was to describe the differences in couples' perceptions of wives' Chronic Fatigue Syndrome (CFS) symptoms and to describe the relationship between changing symptoms and the marital relationship


Cure versus care

The term 'Quality of Life' is often heard... and said at the Hospice to remind us of our main aim and purpose. As most of our patients have been diagnosed with a terminal disease, further treatment is often inappropriate and cure is not always an option.


Current Practice Patterns of Primary Care Physicians in the Management of Patients With Hepatitis C

We administered a survey to 1,233 primary care physicians in a health maintenance organization (HMO) in April 1997 to assess their knowledge of the risk factors for Hepatitis C Virus infection and approach to the management of 2 hypothetical Hepatitis C Virus antibody-positive patients


Differences in Knowledge of Hepatitis B Among Vietnamese, African- American, Hispanic, and White Adolescents in Worcester, Massachusetts

Adolescent knowledge about risk of infection was low in this study. Attention should be directed at providing health education on hepatitis B to adolescents, particularly to Vietnamese. Health care providers, community health educators, and others engaged in the effort to control and eradicate hepatitis B should be sensitive to the unique educational and cultural needs of high-risk southeast Asian adolescent populations.



Finds that volunteer college students who have had previous contact with individuals who have a physical disability are more at ease with their peers who are disabled than those who have had no contact. Suggests that contact may alter the pattern of thoughts concerning interaction with people who have a disability.



The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one’s life.


Epidemic Ravages Caregivers; Thousands die from diseases contracted through needle sticks

Over the next 20 years, the epidemic would ravage the nation's medical workers. Thousands of needle stick victims would die of AIDS, hepatitis and other blood-borne infections. Tens of thousands more would contract devastating diseases. Hundreds of millions of dollars would be spent every year on replacing and treating dying and infected workers.


Factors Associated with Prevalent Hepatitis C: Differences among young adult injection drug users in lower and Upper Manhattan, Hew York City

This study examined correlates of prevalent Hepatitis C Virus infection among young adult injection drug users in 2 neighborhoods in New York City

107 kb pdf

Fear of dying and HIV infection vs. hepatitis B Infection

Fear of certain death seems to account for the greater concern about exposure to HIV than to Hepatitis B.


Hepatitis B, and prejudice, ravage a nation And even though the virus is impossible to transmit by casual contact and the government has repeatedly pledged to protect them, the carriers suffer from rampant discrimination. They are routinely fired from their jobs or forced out of universities or segregated in separate dormitories. Even kindergartens have sometimes barred them.  
Hepatitis C – a relationship with stigma PowerPoint Presentation 116 kb
Hepatitis C…Overcoming the Barriers Presentation concerning HCV 534 kb pdf

Hepatitis C Virus activist seen as Satan

"You are not of Christ, but of Satan." That's exactly what they said to me. That was the declaration recently from a Board of Deacons at a large area church.


Hepatitis C virus-infected patients (41%) report communication problems with physicians "...The current study demonstrated that more than one-third of patients diagnosed with HCV infection perceived interaction difficulties with physicians. Nearly one-half of the patients with conflict reported being misdiagnosed or inadequately treated and questioned the competence of their physicians. In addition, patients perceived negative attitudes and a feeling of disrespect from their physicians. This led to a feeling of being stigmatized, mistreated, or abandoned in more than one-fifth of those reporting such difficult interactions....."  

Hidden Epidemic Confronting STD's

The Hidden Epidemic is the report of a 16 member committee on prevention and control of sexually transmitted diseases set up by the Institute of Medicine to assess the current impact of such diseases and to "provide direction for future public health programmes, policy and research in STD prevention and control."


Illegal Drug Users Need/Deserve Treatment for Hepatitis C

University of California-San Francisco (UCSF) researchers are recommending that illicit drug users should be eligible to receive treatment for the hepatitis C virus.


Needle-Exchange Program Cut Hepatitis C Transmission Rate

According to a report presented to the American Association for the Study of Liver Disease, injection drug users who began injecting drugs after the 1993 legalization of a safe needle program in San Francisco had a much lower risk of contracting hepatitis C virus (Hepatitis C Virus) than those who started earlier.


On Stigma and its Public Health Implications

In addition to variability in its definition the stigma concept and research based on it have been criticized for the narrow and biased vision it has allowed. Two critical challenges can be identified. The first is that many social scientists who do not belong to stigmatized groups and who study stigma, do so from the vantage point of theories that are uninformed by the lived experience of the people they study



Phenomenology is a movement in philosophy that has been adapted by certain sociologists to promote an understanding of the relationship between states of individual consciousness and social life. As an approach within sociology, phenomenology seeks to reveal how human awareness is implicated in the production of social action, social situations and social worlds


Prevalence and Duration of Hepatitis C Among Injection Drug Users

There are an estimated 1.0 to 1.5 mil- lion injection drug users in the United States.) To anticipate the future burden of Hepatitis C Virus-related care among injection drug users, it is important to determine the prevalence and duration of infection.


Prevalence of hepatitis C in prisons

We used cross-sectional willing anonymous salivary hepatitis C (WASH-C) surveillance linked to self-completed risk-factor questionnaires to estimate the prevalence of salivary hepatitis C antibodies (HepCAbS) in five Scottish prisons from 1994 to 1996.


Preventing Discrimination and Reducing Stigma and Isolation

In order to provide better access to health services for people with hepatitis C, it is particularly important that the discrimination common in health care settings is acknowledged and actively challenged

413 kb pdf

Promoting health, reducing stigma: Closing the inequality gap in access to primary health care for women living with Hepatitis C

One of the major challenges facing women diagnosed with hepatitis C is overcoming the stigma attached to this illness which frequently acts as a barrier to appropriate and timely primary health care.


Report of the enquiry into hepatitis C related discrimination
Concepts of health and illness, well-being and disease are cultural 
constructs—they vary with time and place, with ideology and belief.  
Over the course of history our views about health and illness have
465 kb pdf


These women have been disproportionately poor, African-American, and Latina. Their neighborhoods have been burdened by poverty, racism, crack cocaine, heroin, and violence.


Stigma and Hepatitis C


Millions of Americans live with the hepatitis C virus (HCV). Although potentially life threatening, the vast majority of those with HCV will die with it and not of HCV. In most cases, HCV is manageable and treatable. However, HCV may test the physical, emotional and spiritual health of those with it. HCV touches the homes, workplace and communities of all those within its reach. An often overlooked and painful component of HCV is stigma. Although invisible, stigma is a harsh reality. For some, the stigma of HCV hurts more than HCV itself. This guide discusses the ways in which HCV is stigmatized and provides tools for confronting and living with HCV’s senseless labels. Stigmas hurt all of us. We may not all have HCV, but we all live with it. Living without stigmas and with compassion is just plain good sense. Pdf 197 kb
Stigma of Hepatitis C and Lack of Awareness Stops Americans From Getting Tested and Treated 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).  
STIGMA IN CHRONIC HCV DISEASE PowerPoint presentation 571 kb

Striking Lack of Awareness

People with hepatitis C infection deserve the same tools as those with HIV so that they can become experts about their virus


Surveillance, Social Risk, and Symbolism: Framing the Analysis for Research and Policy

This essay proposes a holistic heuristic for practical prevention policy making. Rather than focusing piecemeal on specific "barriers" to testing and care, the surveillance debate counsels public health policy makers to provide the conditions of opportunity, information, motivation, and confidence that people with HIV need to accept an effective program of early intervention.



Most cases of hepatitis C result from "lifestyle factors," rather than occupational risks. That's a polite way of saying that most cases result from intravenous drug use with dirty needles or from multiple sex partners


Through the Looking Glass: The health and socio-economic status of hepatitis C positive Transfusion Recipients

This study deals with the socio and economic impact of transfusion recipients and what occurs to them over time

305 kb pdf

WHEN FAMILY MEMBERS JUST CAN'T UNDERSTAND There are probably few things in life that are more hurtful than being rejected by family members when we need them most. Unfortunately, many patients find that a diagnosis of hepatitis C not only causes friends to scatter, but also contributes to some families literally splitting apart.  
Why conduct an enquiry into hepatitis C related discrimination
In recognition of the seriousness of the issue of hepatitis C related 
discrimination, the dearth of research, and the need for improved strategies 
to prevent and eliminate such discrimination…the anti-Discrimination Board 
of NWS undertake a statewide inquiry into Hepatitis C related discrimination
to examine the nature and extent of hepatitis C related discrimination, and 
recommend legal and administrative changes across a wide range of activities.
442 kb pdf



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