1. Core Competency 6: Overcoming Barriers Related to HCV Care
Lesson 1: Stigma
July 2017

2. Authors and Funders
This presentation was prepared by Henry Pacheco, MD, and Rachel Galarza, MSHCM, (South Central AETC) for the AETC National Coordinating Resource Center in July 2017.
This presentation is part of a curriculum developed by the AETC Program for the project: Jurisdictional Approach to Curing Hepatitis C among HIV/HCV Co-infected People of Color (HRSA ), funded by the Secretary's Minority AIDS Initiative through the Health Resources and Services Administration HIV/AIDS Bureau.

3. Lesson Objective
Understand the impact of stigma on HCV-co-infected PLWH

4. What Is Stigma?
“Shame and disgrace that result from prejudice associated with something regarded as socially unacceptable”1
“Stigma can be manifested by use of certain words, beliefs, and actions that have negative meaning for those at high risk for getting HIV or those already living with HIV”1

5. HIV-related Stigma: Definition
HIV-related stigma refers to prejudice, negative attitudes, and abuse directed at PLWH and those at risk2
HIV-related stigma is characterized by social disqualification of PLWH3
In 35% of countries with available data, over 50% of men and women report having discriminatory attitudes toward people living with HIV.
Health-related stigma is also characterized by social disqualification targeting other features of a person's identity-such as ethnicity, sexual preferences or socio-economic status-which through limited access to services and other social disadvantages result in adverse effects on health.

6. How HIV Stigma Affects PLWH5,6
Can lead to the concealment of one’s HIV status for fear of being shunned (stigmatized) by others
Fear of disclosure can prevent accessing care and treatment for HIV
Patients may be unwilling to take medications where they can be seen by others
Concealment of HIV status leads to social isolation and internalized feelings of self-loathing and cycle of hopelessness
Stigma occurs when a person is identified and labeled as “tainted” or “less desirable” and resulting in the individual being devalued in the eyes of society.

7. Targets of HIV Stigma
Primary HIV Stigma is the stigma directed at those individuals who are infected and/or perceived as being infected with HIV7
Secondary (or associated) HIV Stigma is aimed at individuals or groups associated with those infected, such as partners, family members, friends, professionals, and volunteers8
Secondary HIV stigma such as: partners, family members, friends, professionals, volunteers and agencies that have close proximity with those infected.

8. Self-stigmatization9 What is it? What impact can it have?
The shame that PLWH experience if they internalize negative reactions of others (also referred to as internalized stigma)
What impact can it have?
Depression
Anxiety
Withdrawal
Feelings of worthlessness
Isolation of the individual
Negative impact on PLWH ability to access services
Examples of internal stigma are: (felt or imagined stigma) is the way a person feels about themselves, e.g. shame, fear of rejection and discrimination. 12
Self-exclusion from services or opportunities: fear of disclosure
Perceptions of self: PLWH having low self-esteem as a result of HIV status.
Social withdrawal: PLWH withdrawing from social and intimate contact.
Overcompensation: believing that they have to contribute more than other people.
Examples of external stigma are:
Avoidance: people avoiding PLWH or not wanting to use the same utensils.
Rejection: family members or friends or groups no longer willing to associate
Moral judgement: people blaming PLWH for their HIV status or seeing as immoral
Stigma by association: people who associate with PLWH are stigmatized
Unwillingness to invest in PLWH: PLWH may be marginalized within an organization
Discrimination: opportunities denied. denied employment; medical care;
Abuse: PLWH being physically or verbally abused.
Victimization: e.g. children and orphans who are infected or affected by HIV.
Abuse of human rights: e.g. breaches of confidentiality such as revealing someone’s status to another without consent, or being tested without giving informed consent.

9. Stigma and HIV Disparities Model10
The Stigma and HIV Disparities Model demonstrates the effect of the relationship between societal stigma and racial/ethnic HIV disparities as it relates to risk, incidence and screening, treatment, and survival. Societal stigma is based on a negative assessment associated with a particular attribute or characteristic such as race, ethnicity, or sexual orientation. Societal stigma related to race/ethnicity has a significant impact on sustained racial/ethnic HIV disparities through its manifestation at the structural and individual levels.

10. Stigma-reduction Strategies11
Intrapersonal level
Counseling
Cognitive-behavioral therapy
Self-help and support groups
Treatment
Empowerment
Interpersonal level
Care and support
Home care teams
Community-based rehabilitation
Community level
Education (social marketing, mass media)
Peer support
Institutional level
Training programs
Policy development
Governmental/structural level
Legal interventions
Rights-based approaches
Stigma is considered a major barrier to reducing the HIV/AIDS epidemic in the nation and worldwide. For example, stigma prevents many health care providers from becoming involved in HIV care. It also prevent people from getting tested for the fear of being rejected and ostracized should they become infected with HIV. Those that already tested positive may also be deterred from accessing health care due to fear of becoming known as someone who has HIV or fear of running into someone they know at the clinic. Stigma reduction efforts are given minimal attention and usually addressed by one lecture provided to staff. As the authors of the cited study indicate “the complexity of HIV/AIDS related stigma is often cited as a primary reason for the limited response to this pervasive phenomenon”.

11. Disclaimer and Permissions
Users are cautioned that because of the rapidly changing medical field, information could become out of date quickly.
You may use or present this slide set and other material in its entirely or incorporate into another presentation if you credit the author and/or source of the materials.
The complete HIV/HCV Co-infection: An AETC National Curriculum is available at:

12. Lesson 6.2: Health Literacy
Continue to next lesson
Lesson 6.2: Health Literacy