Stigma and the Impact on Public Health
2012 Ryan White HIV/AIDS Program Grantee Meeting
Wednesday, November 28, 2012
Marriott Wardman Park Hotel, Washington, DC
Mission
NASTAD strengthens state and territory-based leadership,
expertise and advocacy and brings them to bear on
reducing the incidence of HIV and viral hepatitis infections
and on providing care and support to all who live with
HIV/AIDS and viral hepatitis
Vision
NASTAD’s vision is a world free of HIV/AIDS and viral
hepatitis
National HIV/AIDS Strategy
The United States will become a
place where new HIV infections
are rare and when they do occur,
every person, regardless of age,
gender, race/ethnicity, sexual
orientation, gender identity or
socio-economic circumstance, will
have unfettered access to high
quality, life-extending care, free
from stigma and discrimination.
Getting to Zero
In conjunction with National Gay
Men’s HIV/AIDS Awareness Day,
NASTAD and the National Coalition
of STD Directors (NCSD) released a
policy statement this month calling
on health departments to take six
steps to respond to the ongoing HIV
and STD epidemics among gay
men/MSM.
Stigma Overview
 What is stigma?
– “An attribute that links a person to an undesirable
stereotype, leading other people to reduce the bearer
from a whole and usual person to a tainted,
discounted one.”
Erving Goffman (1963)
– Stigma exists and is practiced at the individual level
and at the institutional and community levels
Stigma Overview
 What do we mean when we talk about
INSTITUTION-LEVEL stigma?
– Stigma as a feature of cultural groups, neighborhoods,
communities, & organizations
– Anti-immigrant legislation serve as barriers to testing,
prevention and adherence to medical care and
treatment for Latino immigrants
Estimated Number and
Percentage Engaged in HIV Care
MAC AIDS Fund (M·A·F)
 M.A.C. Cosmetics is currently the leading nonpharmaceutical corporate fundraiser for HIV/AIDS
worldwide and has raised over $224 million dollars
to date thanks to the VIVA GLAM campaign.
 MAC AIDS Fund (M·A·F) was established in 1994
and donates funds to communities that offer services
and help to and prevent the HIV/AIDS through
educational programs and services.
VIVA GLAM
 VIVA GLAM is the
backbone for M·A·F and
was launched in 1994.
 VIVA GLAM is a line of
lipsticks and lip-glosses
from which every cent
of the sale price goes to
help those living with
HIV/AIDS around the
world.
M·A·F Grant
 In partnership with the National Coalition of STD
Directors (NCSD), NASTAD was awarded funding
from M·A·F to explore stigma affecting Black and
Latino gay men/MSM.
 The grant work mounts an unprecedented,
aggressive, targeted effort across the silos of HIV
and STD prevention, treatment & care, to examine
and address stigma in public health practice.
Goals of Stigma Work
 Increase comprehensive access to prevention, care
and supportive services for HIV positive and
negative Black and Latino gay men/MSM
 Target social and sexual networks to promote
positive sexual health messages
 Establish and promote evidence-based practices and
tools to educate NSCD and NASTAD members, key
community stakeholders, and public health providers
Stigma on Prevention:
Homophobia & Racism
 Homophobia & racism impact HIV prevention efforts
in three ways:
1. Sexual silence
2. Disclosure and coming out
3. Community mobilization
12
Stigma on Prevention:
Femininity
 Stigma related to femininity affects HIV prevention
efforts in two ways:
1. Accelerated childhood and adolescence for young
black men
2. Socially-rooted expectations for heterosexual
marriage and fatherhood
13
Stigma on Prevention:
HIV/AIDS
 HIV/AIDS stigma affects HIV prevention efforts in
three ways:
1. Reduced condom use
2. Lack of dialogue among HIV-negative and HIV-positive
gay men
3. Increased community viral load
14
Goal of Stigma Survey
 The goal of the survey was to assess stigma at the
institution/community levels
– Survey explores a broad range of types of stigma,
including:
1. Stigma related to HIV/AIDS
2. Stigma related to same-sex sexuality/homophobia
3. Stigma related to gender performance/femininity (among
MSM)
4. Stigma related to race /racism
– Items in survey focus on institutional and community
practices (i.e., as opposed to individual-level
behaviors)
Development of the
Stigma Survey
 Stigma survey items were developed by the
NASTAD staff, with the input from consultants
– Focus group and interview data from NASTAD’s work
with Black & Latino MSM was reviewed
– Related measures, including the Kessler (1999)
stigma scale and Herek & Glunt (1995) internalized
homophobia scale, were drawn upon
– Expert review and input
 The survey was piloted with two jurisdictions (n=56)
during October 2011
– Survey was refined based on the pilot data
Sample Questions
 People in my community think that gay men/MSM
who take the receptive role (i.e. are 'the bottom') in
sexual relations are less masculine than men who
take the insertive role (i.e., are 'the top').
 In my community, fear of others finding out that they
are HIV-positive stops many gay men/MSM from
getting HIV treatment and care.
 In my community, most Black and Latino gay
men/MSM face racism from the local, mainstream
gay community.
Survey Launch
 Launched on December 1, 2011 and closed on
January 31, 2012
– 1,314 respondents completed the survey
– 54 different states/territories represented in the survey
– 18 states had 25 or more respondents with completed
surveys
 Alabama, California, Connecticut, Florida, Illinois,
Kentucky, Maryland, Massachusetts, Michigan, New
York, North Carolina, Ohio, Pennsylvania, South
Carolina, Tennessee, Texas, Virginia, and Washington
Survey Respondents
Demographic Variable
N
%
Age group
18-24
25-44
45-64
65 or older
29
560
656
56
2%
43%
50%
4%
Racial/ethnic group
African-American/Black
Hispanic
White
Other
254
179
764
80
19%
14%
60%
6%
Gender
Male
Female
Transgender or Other
541
734
16
42%
57%
1%
Survey Respondents
(cont’d)
Demographic Variable
N
%
Education
High school/GED or less
College or vocational training
Graduate school
37
599
667
3%
46%
51%
Employment status
Currently employed
1,232
94%
HIV Status
HIV-negative
HIV-positive
Unknown HIV status
1,004
230
29
80%
18%
2%
Survey Respondents
(cont’d)
Demographic Variable
N
%
Sexual Orientation
Gay/lesbian/homosexual
Bisexual
Heterosexual
443
71
750
35%
6%
59%
Profession
Health dept. manager or staff
CBO manager or staff
Health provider
Community member
Researcher
323
336
232
216
73
27%
29%
20%
18%
6%
Neighborhood
Urban
Suburban
Rural
644
412
228
50%
32%
18%
Average Stigma Scores
Average Stigma Scale Scores
Range: 1.0 (strongly disagree) to 5.0 (strongly agree)
3.50
3.36
3.40
3.30
3.41
3.33
3.28
3.20
3.07
3.10
3.00
2.90
2.80
Overall
HIV stigma
Gender-based stigma
Race/ethnicity-based Sexuality-based stigma
stigma
Findings – States w/ 25+
Responses
3.6
3.55
3.5
3.45
3.4
3.35
3.3
3.25
3.2
3.15
3.1
Findings – Region
 Participants from different geographic regions
showed significant differences perceived stigma
– Those from the South
and Midwest reported
significantly higher
levels of HIV-, gender-,
and sexuality-based
stigma than those from
the West and Northeast
Stigma Scale Differences by Region (p < .01)
3.36
3.37
3.4000
3.3000
3.18
3.17
3.2000
3.1000
3.0000
Northeast
South
Midwest
West
Findings – Racial/Ethnic
Group
 Across domains, participants from different
racial/ethnic groups had significantly different
Stigma Scale Differences by Race/Ethnicity
perceptions of stigma
(p < .01)
– A consistent trend
was that white
participants
expressed the lowest
levels of stigma, while
Black participants
perceived the highest
levels
3.38
3.34
3.40
3.30
3.33
3.23
3.20
3.10
African-American/Black
Hispanic/Latino
White
Other (including Asian &
Native American)
Findings – Racial/Ethnic
Group
 HIV-related stigma:
– Black participants perceived significantly higher levels
than White, Hispanic/Latino, and “Other” race
participants
 Gender-based stigma:
– Latino and Black participants perceived significantly
higher levels than white and “Other” race participants
 Race/ethnicity-based stigma:
– Latino, Black, and “Other” race participants perceived
significantly higher levels than white participants
Findings – Gender
 Gender group differences were observed for genderbased stigma, race/ethnicity-based stigma, and
overall perceived stigma Stigma Scale Differences by Gender (p = .01)
– Transgender
respondents
consistently reported
higher levels of
gender- and
race/ethnicity-based
stigma than other
respondents
3.55
3.60
3.50
3.40
3.31
3.25
3.30
3.20
3.10
Male
Female
Transgender or
other
Findings – HIV Status
 Across domains, participants from different HIV
status groups had significantly different perceptions
Stigma Scale Differences by HIV Status
of stigma
(p < .01)
– HIV-positive
participants perceived
higher levels of HIV-,
gender-, race/ethnicity-,
and sexuality-based
stigma; unknown status
participants perceived
the lowest levels of
stigma
3.42
3.50
3.40
3.30
3.26
3.14
3.20
3.10
3.00
HIV negative
HIV positive
HIV unknown
Findings – Sexual
Orientation
 Differences among sexual orientation groups were
observed for gender-, race/ethnicity-, and sexualitybased stigma, and overall perceived stigma
– Overall, sexual
minority
participants
perceived more
stigma than
heterosexual
participants
Stigma Scale Differences by Sexual Orientation (p < .01)
3.50
3.36
3.31
3.40
3.23
3.30
3.20
3.10
3.00
Gay/Lesbian/Homosexual
Bisexual
Heterosexual
Findings –
Profession/Job
 Participants from different professional backgrounds
were significantly different on perceptions of stigma
– Participants who worked
in CBOs perceived
significantly higher levels
of race/ethnicity- and HIVbased stigma than
participants from the
health department
– However, there were no
significant differences by
profession on overall
stigma, gender- or
sexuality-based stigma
Optimal Care Checklist:
Provider
The provider OCC document
serves as a tool to familiarize
providers with the unique sexual
health needs of Black and
Latino gay men/MSM.
Optimal Care Checklist:
Patient
The patient OCC document
informs Black and Latino gay
men/MSM about HIV and STD
testing options, vaccinations
(e.g., Hepatitis A & B), and other
sexual health information.
10 Actions to Reduce
Stigma
1. Build an understanding of and commitment to
stigma and discrimination reduction. Use existing
tools for measuring stigma and discrimination to “know
your epidemic” in terms of the prevalence of stigma and
discrimination and their impact on the response to HIV
and STD.
2. Facilitate the inclusion of stigma/discrimination
reduction in HIV and STD strategic planning, funding
and programming activities. Ensure that planning,
funding and programming efforts include attention to
stigma and discrimination.
10 Actions to Reduce
Stigma (continued)
3. Use or promote approaches that address the root
causes of stigma and discrimination. Implement
programs that tackle the actionable causes of stigma
(e.g., lack of awareness of stigma and discrimination
and their negative consequences).
4. Advocate for a multifaceted approach to stigma and
discrimination. A response which employs a range of
approaches will have the greatest impact (e.g. “know
your rights” campaigns; social mobilization and media
campaigns; legal support to those affected by stigma
and discrimination).
10 Actions to Reduce
Stigma (continued)
5. Work within a cultural framework to address stigma.
Stigma needs to be addressed at the community level.
HIV prevention providers should focus on the expression
of those attitudes and encourage positive, culturallyappropriate messages about HIV and STD prevention.
6. Normalize HIV testing. While there are significant
issues with insurance coverage of HIV testing and
confidentiality of test results, the normalization of HIV
testing could increase the number of individuals living
with HIV who know their status.
10 Actions to Reduce
Stigma (continued)
7. Target prevention messages at people who are HIV+
and HIV-. The development of prevention messages for
people living with HIV/AIDS must acknowledge AIDS
stigma and promote non-stigmatizing images of people
living with HIV/AIDS.
8. Successful HIV prevention outreach may not even
mention AIDS. It is important to meet the needs of the
targeted population first. After gaining that trust, HIV
prevention providers can begin to discuss HIV
transmission.
10 Actions to Reduce
Stigma (continued)
9. Increase cultural and media exposure of people
living with HIV/AIDS. Media representation of people
living with HIV/AIDS increases cultural exposure to AIDS
and may reduce some of the stigma surrounding the
disease.
10. Increase coordination between community-based
organizations, funders and HIV and STD prevention
providers. It is important for all stakeholders to work
together to promote a greater understanding of, and
exposure to, HIV/AIDS.
Additional Resources
on Stigma
 Key Programmes to Reduce Stigma and Discrimination
and Increase Access to Justice in National HIV
Responses. UNAIDS (2011)
 Reducing HIV Stigma and Discrimination: A Critical Part
of National AIDS Programmes: A Resource for National
Stakeholders in the HIV Response. UNAIDS (2007)
 Taking Action against HIV Stigma and Discrimination.
DFID (2007)
Thank You
Dana Cropper Williams
dcropper@NCSDdc.org
Francisco Ruiz
fruiz@NASTAD.org
Jermel Wallace
jwallace@NCSDdc.org
jwallace@NASTAD.org
For more information:
www.NCSDdc.org
www.NASTAD.org