stigma and discrimination in viral hepatitis: the...
TRANSCRIPT
Marcelo Contardo Moscoso Naveira, MD, MPH
Carlos Norberto Varaldo, Grupo Otimismo
Stigma and Discrimination in Viral Hepatitis:
The Voice of the Patient
Conflicts of Interest
• No conflicts of interest
Background
Ministry of Health of Brazil and Viral Hepatitis
• 1988: Unified Health System (SUS), 2003: National Program for Viral Hepatitis
Grupo Otimismo (“Optimism Group”)
• 1999: Founded by Carlos Norberto Varaldo
• Over 15 years advocating in behalf of People Who Live With Hepatitis
Viral Hepatitis
• Important public health problem, silent killer
• Lack of information in general population
• Stigma and discrimination
Research Aims and Objectives
1. Understand the role of stigma and discrimination from the point of view of the
patient
2. Identify key factors and most affected aspects of life and relationships
3. Provide voice to the people who live with a silent disease
4. Recommend areas where education and other measures count have positive
effect
Methodology
• Twelve-question survey was advertised through “Grupo Otimismo” web page
and mailing list
• Performed with “SurveyMonkey”, a well known tool used for online
questionnaire widely accepted by the scientific community
• Guaranteed user privacy. Did not allow storage of any personal information
other than the IP number used for a completed questionnaire in order to
prevent additional entries from the same computer.
• Those undergone the survey were required to sign an electronic informed
consent
Results
A total of 1,217 people answered the questionnaire, 49.6% of them reported
some discrimination
Family Friends Co-workers Partner Support Groups Social Network Nobody
% 94.1 73.7 46.1 57.4 31.4 9.1 2.1
0
10
20
30
40
50
60
70
80
90
100
Graph 1. Informing others of their status
Results
Self-esteem
Compelled to
informothers
Shame Family Job FriendsAvoidanc
eRelations
hipsAffective
R.Sexual R. Academic No effect
% 55.8 46.1 41.4 23.1 41.1 46.9 3.6 35.8 33.3 42.7 11 27.9
0
10
20
30
40
50
60
Graph 2. After diagnosis, has hepatitis affected your life?
Results
Family avoided physical contact Friends stopped inviting for events Dismissal
% 24.6 23.8 10.1
0
5
10
15
20
25
30
35
40
45
50
Graph 3. What changed in relationships?
Results
Avoidance Distance Well-treated Indifferent
% 6.9 25.5 70 42.9
0
10
20
30
40
50
60
70
80
Graph 4. Healthcare workers’ reaction
Results
Dentist Manicure Gym Lab
% 21.2 17.1 4.4 10.8
0
5
10
15
20
25
Graph 5. Services where discrimination took place
Results
Some degree of rejectionNo solidarity orcomprehension
Solidarity andcomprehension
Some comprehension Indifference
% 38.7 33.9 61.1 72.45 48.9
0
10
20
30
40
50
60
70
80
Graph 6. Other people's reaction
Conclusion
• Viral hepatitis is not only a silent disease, but also a silencing event
• The lack of information and poor reception by family, friends and healthcare
workers is worrisome
• The survey results demonstrates the need for a broad campaign targeting
awareness and stigma
• There is no true progress with new treatments in viral hepatitis healthcare if the
quality of life of the patient is harmed by stigma and discrimination, effects that
might last long after sustained virological response is achieved
Carlos Varaldo – Grupo Otimismo
• “Support Group for People Who Live with Hepatitis”
• www.hepato.com
Marcelo C. M. Naveira – Viral Hepatitis Coordination
• Secretariat for Disease Surveillance
• Ministry of Health of Brazil