1. Community Advocacy & Education to End Stigmatizing HIV/TB Language
C. Lee1§, R. Campbell2, M. Frick3, R. Siskind4, N. Morar5, B. Seaworth3, J. Schouten2
1Community Research Advisors Group (CRAG), Office of HIV/AIDS Network Coordination2, 3Treatment Action Group (TAG), 4Division of AIDS, NIAID, NIH Worksforce Operations, Communication and Reporting Branch, 5South Africa Medical Research Council, Prevention Research Unit
CONCLUSIONS
The collaborative advocacy by CRAG and CP adds to the growing body of advocacy led by CABs.
This body of work may offer a model for other patient and community groups seeking to combat stigma in clinical research and practice.
Efforts to eliminate stigmatizing language may help to reduce the dual stigma of TB/HIV co-infection by improving the terms through which people engage with medical research and public health programs.
RESOURCES
Stop TB Partnership. Every Word Counts: Suggested Language and Usage for Tuberculosis Communications
Heartland National TB Center Stop the Stigma Campaign
UNAIDS. HIV Terminology Guidelines
Zachariah et al. Language in TB services: can we change to patient-centered terminology and stop the paradigm of blaming the patients? IJTLD. 2012;16(6):714–7.
Frick et al. End stigmatizing language in TB research and practice. BMJ. 2015;350:h1479.
BACKGROUND
Many studies have shown that stigma affects the willingness of people with TB and HIV to undergo screening, seek treatment and remain in care.
Stigma is multi-dimensional in origin, and one source of stigma is the incriminating terminology used to describe people with TB and TB/HIV.
Stigmatizing terms like “suspect” and “defaulter” remain rife in TB/HIV research and practice despite community calls to discontinue these terms.
OBJECTIVES
To share CP/CRAG global efforts to address the impact of HIV/TB stigma on individuals and communities.
To enhance the capacity for advocacy to end the use of stigmatizing terminology in HIV/TB research.
To provide community members and researchers with effective strategies to reduce stigma and replace stigmatizing language person-centered terminology.
METHODS
The Community Research Advisors Group (CRAG), the community advisory board (CAB) to the Tuberculosis Trials Consortium (TBTC), and Community Partners (CP), a group of community representatives working across the 5 National Institutes of Health HIV/AIDS clinical trials networks, formed a collaboration to end the use of stigmatizing TB/HIV terminology.
Advocacy activities targeted several types of institutions: (1) Professional societies; (2) Research Networks; (3) Guidelines panels; (4) TB programs.
Interventions by CRAG and CP targeted the use of stigmatizing language at multiple stages of the research-to-practice continuum, from research planning and conduct to publication to the translation of research into clinical practice.
Advocacy tactics included sign-on letters to professional societies and academic publishers, internal memos addressed to investigators at research networks, community participation in guidelines development, and hospital-based education on stigma.
KEY RESULTS
Action: CRAG, CP, and other partners write an open letter to the International Union Against TB and Lung Disease (IUATLD) calling for the retirement of stigmatizing and criminalizing language from its conferences and academic journals.
Outcome: IUATLD “commits to communicating in a manner that embodies respect for all people affected by TB,” and to include guidance on use of stigmatizing terms in conference and journal submission processes.
Action: CRAG sent a memo to TBTC leadership encouraging investigators to eliminate stigmatizing language from proposals, protocols, consent forms, and publications. Sending a formal communication to network leadership was a tactic borrowed from CP.
Outcome: The TBTC Publications and Presentations Committee agreed to adopt a standing procedure for replacing stigmatizing terms with patient-centered alternatives.
Action: The CRAG and partners urged the Stop TB Partnership to finalize its guidance on non-stigmatizing language in tuberculosis, a document that had remained in early draft form since 2012.
Outcome: The Stop TB Partnership finalized and published Every Word Counts: Suggested Language and Usage for Tuberculosis Communications in 2015.
Case Study: Heartland National TB Center Stop the Stigma Campaign
CRAG member Barbara Seaworth and her team at the Heartland National T Center in San Antonio, Texas led the “Stop the Stigma” Campaign encouraging US TB programmers to stop the use of stigmatizing language. The National TB Controllers Association, the National Society of TB Clinicians, and dozens of state, county, and local health departments and TB programmers pledged to stop using stigmatizing language.
The CRAG is an international, community-based advisory body that works to ensure the meaningful participation and engagement of affected communities in research conducted by the U.S. Centers for Disease Control and Prevention’s Tuberculosis Trials Consortium (TBTC).
The CP is a Community Partners (CP), a group of community representatives working across the 5 National Institutes of Health HIV/AIDS clinical trials networks
Cynthia C Lee
CRAG Member
Mike Frick
CRAG Coordinator
Russell Campbell
HANC Deputy Director
Barbara Seaworth
CRAG Member
Visit the CP CAB online at
Visit the CRAG online at
PRESENTED AT THE 21ST INTERNATIONAL AIDS CONFERENCE - DURBAN, SOUTH AFRICA