Text: NIH Announces Conference on Disease and Stigma

30 August 2001

Text: NIH Announces Conference on Disease and Stigma

Denigrating attitudes toward disease victimize the sick, NIH says

U.S. and international agencies will bring together health professionals from all over the world September 5-7 to examine how social stigma victimizes the sick and interferes with health care. The National Institutes of Health (NIH) announced the upcoming meeting in an August 30 press release.

Social stigma against disease and its victims can discourage patients from seeking the diagnoses and care they need. The stigma associated with conditions such as HIV/AIDS and leprosy has been widely acknowledged, but the NIH release says many cultures still have denigrating attitudes toward conditions such as epilepsy and physical disability.

"It is a pervasive problem that affects health globally, threatening an individual's psychological and physical well-being," according to the NIH press release.

The conference to be held in Washington, D.C. will be devoted to the development of a global research agenda to determine the social sources of stigma, its effects on patient care, the impact of the media and other issues.

Following is the text of the NIH press release:

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NATIONAL INSTITUTES OF HEALTH

John E. Fogarty International Center for Advanced Study in the Health Sciences

NIH NEWS RELEASE

"STIGMA AND GLOBAL HEALTH: DEVELOPING A RESEARCH AGENDA" AN INTERNATIONAL CONFERENCE

September 5-7, 2001
Bethesda, Maryland

A May 8, 2001, article in "The New York Times" discusses the plight of miners with AIDS in Botswana. The article states, "Typically, miners who are believed to be infected are shunned. They sit alone in buses that carry workers to the pit. They eat alone in the company kitchens because their colleagues are afraid to share utensils or crockery with them." Although this article focuses on individuals with one disease in one country of Africa, it could be describing the isolation and humiliation that faces people with stigmatizing conditions in many parts of the world.

To explore the relationship between stigma and public health, examine the social and cultural determinants of stigma, explore how stigma prevents people from seeking or getting treatment for disease, and determine future research opportunities, the Fogarty International Center (FIC), in partnership with other National Institutes of Health (NIH) Institutes and Offices, U.S. agencies, and domestic and international organizations (see list below), announces a major international conference oriented toward developing a research agenda that will lead to the mitigation of the impact of stigma on individuals and societies. Such an agenda would be expected to include activities designed not only to better understand stigma's social and cultural determinants but also to identify and test ideas for effective new behavioral interventions.

Stigma has been defined as a deeply discrediting attribute that reduces a person to one who is in some way tainted and can therefore be denigrated. It is a pervasive problem that affects health globally, threatening an individual's psychological and physical well-being. It prevents individuals from coming forward for diagnosis and impairs their ability to access care or participate in research studies designed to find solutions. Much attention has been paid to the plight of the stigmatized, including those with AIDS or suspected to have AIDS, those with leprosy, and those suffering from mental health disorders. But stigma goes beyond these disorders to include some health conditions that are no longer stigmatized in the developed world but continue to have an impact in resource-poor countries.

Action has been slow in coming. Little is known about how pervasive the problem of stigma is in the developing world and about how health care systems can work to tackle its negative effects on individuals and societies.

"Stigma and Global Health: Developing a Research Agenda," will be held at the Bethesda Marriott Hotel on September 5- 7, 2001. The Conference will bring together health professionals, scientists and media and policy experts from around the world, including more than 90 from the developing world, to summarize current knowledge of stigma, identify existing gaps, and determine the directions for social science and behavioral research to illuminate the issues. It will focus on a small group of conditions, including HIV/AIDS, epilepsy, mental health, alcohol and drug abuse, and physical anomalies, but will otherwise be far ranging in scope. This conference is especially notable because it is the first to address the relationship of stigma to global health, including infectious and non- infectious diseases and behavioral and physical conditions, rather than only one category of disease, and because many of the participants will be from the developing world, where stigmatized conditions represent an enormous burden.

Discussions will address stigma both domestically and internationally. Meeting topics include:

-- Definitions, Background, and History of Stigma

-- Examples of Health-Associated Stigma: AIDS, Epilepsy, Schizophrenia, Physical Anomalies

-- Stigma and Public Health

-- Impact of the Media

-- Social Considerations

Background papers, final conference agenda, a list of all speakers and moderators, and directions to the Bethesda Marriott Hotel can be accessed at: http://www.stigmaconference.nih.gov.

NOTE: The standard registration fee for this conference is waived for members of the press. However, space is limited so please RSVP and provide your press credentials when you register for the conference by calling Jennifer Cabe or Irene Edwards at the FIC Communications Office at 301-496- 2075.

CONFERENCE PARTNERS

NIH:

-- Fogarty International Center
-- National Cancer Institute
-- National Human Genome Research Institute
-- National Institute of Allergy and Infectious Diseases
-- National Institute of Child Health and Human Development
-- National Institute of Dental and Craniofacial Research
-- National Institute of Mental Health
-- National Institute of Neurological Disorders and Stroke
-- National Institute of Nursing Research
-- National Institute on Alcohol Abuse and Alcoholism
-- National Institute on Drug Abuse
-- Office of the Director: Office of AIDS Research, Office of Behavioral and Social Sciences Research, and Office of Research on Women's Health

Centers for Disease Control and Prevention

Global Forum for Health Research

March of Dimes

National Science Foundation

Pan American Health Organization

Substance Abuse and Mental Health Services Administration

World Health Organization

FIC is the international component of the NIH. It promotes and supports scientific discovery internationally and mobilizes resources to reduce disparities in global health. NIH is an agency of the U.S. Department of Health and Human Services. Press releases, fact sheets, and other FIC-related materials are available at http://www.nih.gov/fic.

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