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It's better to light a candle than to curse the darkness

     
STIGMA AND GLOBAL HEALTH RESEARCH PROGRAM
 
RELEASE DATE:  June 20, 2002
 
RFA:  TW-03-001
 
PARTICIPATING INSTITUTES AND CENTERS (ICs):
Fogarty International Center (FIC) 
 (http://www.nih.gov/fic/)
Health Research Services Administration (HRSA) 
 (http://www.hrsa.gov)
National Center on Minority Health and Health Disparities (NCHMD)
 (http://ncmhd.nih.gov/)
National Human Genome Research Institute (NHGRI)
 (http://www.nhgri.nih.gov/)
National Institute of Allergy and Infectious Diseases (NIAID)
 (http://www.niaid.nih.gov/default.htm)
National Institute of Dental and Craniofacial Research (NIDCR)
 (http://www.nidcr.nih.gov/)
National Institute of Mental Health (NIMH) 
 (http://www.nimh.nih.gov/)
National Institute on Alcohol Abuse and Alcoholism (NIAAA) 
 (http://www.niaaa.nih.gov/)
National Institute on Drug Abuse (NIDA) 
 (http://www.nida.nih.gov/)
Office of AIDS Research (OAR)/ NIH Office of the Director
 (http://www.nih.gov/od/oar/)
Office of Behavioral and Social Science Research (OBSSR)/ NIH 
Office of the Director
 (http://obssr.od.nih.gov/)
Office of Research on Women's Health (ORWH)/ NIH Office of the Director
 (http://www4.od.nih.gov/orwh/)
 
LETTER OF INTENT RECEIPT DATE:  October 14, 2002
APPLICATION RECEIPT DATE:  November 14, 2002
 
THIS RFA CONTAINS THE FOLLOWING INFORMATION
 
o        Purpose of this RFA
o        Research Objectives
o        Mechanisms of Support 
o        Funds Available
o        Eligible Institutions
o        Individuals Eligible to Become Principal Investigators
o        Special Requirements 
o        Where to Send Inquiries
o        Letter of Intent
o        Submitting an Application
o        Peer Review Process
o        Review Criteria
o        Receipt and Review Schedule
o        Award Criteria
o        Required Federal Citations
 
PURPOSE OF THIS RFA 
 
The purpose of this initiative is to 
stimulate investigator-initiated research 
on the role of stigma in health, and on 
how to intervene to 
prevent or mitigate its negative effects 
on the health and welfare of individuals, groups and 
societies world-wide.  Collaborative 
interdisciplinary applications are 
particularly encouraged.  The following Institutes 
and Centers from the U.S. Department of Health and Human 
Services (DHHS):  the Health Research Services Administration (
HRSA), the NIH including: the Fogarty International Center (FIC), National 
Center on Minority Health and Health Disparities (NCHMD), 
National Institute of Neurological Disorders and Stroke 
NINDS), National Human 
Genome Research Institute (NHGRI), National Institute of 
Alcohol Abuse and Alcoholism (NIAAA), National Institute 
of Allergy and Infectious 
Diseases (NIAID), National Institute of Dental and 
Craniofacial Research (NIDCR), National Institute of Drug 
Abuse (NIDA), National Institute of Mental Health (NIMH), 
Office of AIDS Research, 
Office of Behavioral and Social Science Research (OBSSR), 
Office of Research on Women's Health (ORWH); and the Canadian 
Institutes of Health 
Research (CIHR), seek domestic and international applications 
which address stigma-related issues, across a variety of global 
public health 
problems, among individuals and in society.  Relevant issues 
include:
 
1.    How stigma and its consequences, such as discrimination 
affect health (e.g. through physical and psychological abuse, 
denial of economic 
opportunities, poor provision and seeking of health care);
2.    How stigma associated with specific health conditions 
interacts with stigma associated with individual or group 
characteristics (such as gender, race, religion, sexual 
orientation and nationality);
3.    How to prevent and mitigate the negative effects of 
stigma and 
4.    Discrimination on health and health care;
5.    Development of quantitative and qualitative methods and 
techniques to investigate, measure and analyze the extent, 
degree and effects of stigma and 
6.    The effectiveness of current and new interventions;
7.    Examination of the cultural, social, political and economic 
dimensions of stigma and its manifestations;
8.    Methods and safeguards to ensure safety of vulnerable 
research subjects.
 
Such research, which may range from basic to clinical and 
operational, requires expertise across a broad range of 
bio-medical, social and behavioral science fields.  The participants
 in this RFA therefore encourage interdisciplinary, domestic and 
international collaboration to build the scientific foundation of 
stigma research related to health.  Meritorious applications must 
also be relevant to the mission and interests of one or more of 
the participating Institutes or Centers.
 
This RFA is based on recommendations developed in conjunction with 
the NIH sponsored International Conference on Stigma and Global 
Health: Developing a Research Agenda, September 5-7, 2001, Bethesda, 
MD.  Applicants are encouraged to refer to the stigma conference website 
(www.stigmaconference.nih.gov) for extensive information related to 
the topic of this RFA including the agenda with links to speaker 
abstracts, commissioned background papers and a video-cast of the conference.
 
RESEARCH OBJECTIVES
 
The objectives of this initiative are to encourage research across a 
variety of scientific disciplines including the biomedical, social 
and behavioral sciences, to elucidate the etiology of stigma in 
relation to public health as well as to develop and test interventions 
to mitigate the negative effects of stigma on health outcomes.  
Studies may examine stigma and public health in domestic, international 
and cross-cultural contexts, with an emphasis on studies that are 
relevant to global health issues.  Applicants are encouraged to 
undertake interdisciplinary studies, where possible, using behavioral, 
social and biomedical science approaches.
 
The initiative is also designed to attract investigators across a 
broad range of biomedical and non-biomedical fields, including but 
not limited to anthropology, epidemiology, infectious and non-infectious 
diseases, geography, sociology, psychology, psychiatry, neuroscience, 
law, genetics, ethics, economics, political science, biostatistics, 
evaluation and others. 
 
Background
 
According to a seminal work by sociologist Erving Goffman (1963 
"Stigma: Notes on the Management of Spoiled Identity") a stigma is 
an attribute that — according to prevailing societal attitudes - is 
deeply discrediting and reduces a person to one who is in some way 
tainted and can therefore be denigrated.  Individuals may internalize 
the stigmas applied to them by others.  Researchers, therefore, 
differentiate between the "felt" stigma a person perceives and "enacted" 
stigma, which refers to actions upon the individual expressed through 
various forms of discrimination. 
 
Stigma, when applied to health conditions, is a globally pervasive 
problem threatening psychological and physical health at the individual 
and group level.  Stigma helps to perpetuate health inequalities.  
The poor treatment of an individual because of the stigma of the 
condition itself, or of another aspect of that individual's being or 
position in society (such as gender, race, sexual orientation or 
socio-economic status), leads to poor outcomes and perpetuates other 
adverse health, social and economic consequences for the individual, 
their families and communities.  Felt stigma prevents 
individuals from coming forward for timely diagnosis and treatment and 
impairs their ability for self-care, to access care or to participate 
in research studies designed to find solutions.  Enacted stigma 
perpetuates public health problems and prevents societies from 
appropriately addressing health care issues at the community and national 
levels with the appropriate delivery, funding and support of research, 
health care services and legal and educational interventions. 
 
Many diseases and conditions, which persist or worsen if left untreated,
 affect a person's ability to fulfill necessary, culturally expected and 
economically productive roles in society.  The burden of their continued 
care may then fall upon families and communities lacking adequate resources 
or support.  For this reason, stigma and discrimination may greatly magnify 
the social and economic, as well as personal consequences of such diseases 
and conditions, often well beyond their prevalence in the population. 
 
In the case of infectious disease (for example, sexually transmitted diseases),
 stigma and discrimination related to the mode of transmission and preexisting 
attitudes towards some affected individuals can lead to fear of disclosure, 
inadequate and inappropriate treatment of all affected, and the further spread 
of a disease which might otherwise be contained.  The effects on individuals, 
families, communities and nations can be devastating, as illustrated by the 
HIV/AIDS epidemic, particularly in Sub-Saharan Africa. 
 
The disability and loss of productivity due to treatable mental illnesses 
and neurological disorders (such as depression, schizophrenia, epilepsy, 
movement disorders, substance abuse disorders, mental retardation and cerebral 
palsy), when inadequately treated due to stigma and discrimination, contribute 
greatly to the burden of illness on societies around the world (for more 
information please see the "World Health report 2001:  Mental Health-New 
Understanding, New Hope" and the Institute of Medicine report on "Neurological, 
Psychiatric and Developmental Disorders: meeting the Challenge 
of the Developing World", 2001, available at 
http://books.nap.edu/books/0309071925/html/). 
 
The same is true of other physical and developmental health conditions 
(including those which are disfiguring such as craniofacial disorders, and 
those that are physically disabling, such as spinal cord injury leading to 
paralysis) which if treated, mitigated or accommodated need not serve as 
barriers to full and productive lives.  Yet stigma and discrimination often 
prevent the necessary societal action to treat, research and accommodate such 
conditions.  Other public health problems, such as domestic violence and abuse, 
when ignored because of the associated stigma, perpetuate the same problems in 
individuals and across generations, along with other, often stigmatized 
health problems such as mental illnesses, 
drug and alcohol addiction and abuse. 
 
To have an impact, research on stigma-related health problems requires 
the participation of investigators across a broad range of biomedical 
and non-biomedical fields.  Interdisciplinary studies are needed which 
use current behavioral, social and biomedical approaches to elucidate the 
etiology of stigma in relation to health as well as develop and test 
interventions to mitigate the negative effects of stigma on health outcomes. 
 Finally, researchers must better understand the policy-making process so 
they can work to ensure that research results have an impact.
 
Understanding the causes, consequences and effective interventions for 
stigma-related issues and problems has the potential to significantly 
improve treatment and care particularly for public health problems of 
global importance.  In the same way that the effects of stigma magnify 
the personal and societal problems related to such diseases and disorders, 
preventing or mitigating stigma and its effects can profoundly improve the 
lives of individuals and, by extension, their families and the larger society. 
 
The public health community has demonstrated increasing awareness of the 
role of stigma in many diseases and disorders.  Recent conferences have 
focused on the role of stigma in mental illnesses including depression 
and schizophrenia, HIV/AIDS and epilepsy.  These conferences were convened
 by organizations including the Health and Development Networks with UNAIDS,
 the United States Substance Abuse and Mental Health Services Administration,
 the World Health Organization, and the World Psychiatric Association. 
 
This RFA is informed as well by the recent U.S. National Institutes of 
Health International Conference on Stigma and Global Health: Developing 
a Research Agenda (www.stigmaconference.nih.gov).  This conference was 
convened by the Fogarty International Center of the NIH in partnership 
with various other NIH institutes and offices along with other U.S. 
agencies, and domestic and international organizations.  More than 250 
participants from 30 nations, including 23 developing countries, discussed 
stigma associated with a variety of illnesses and conditions including 
HIV/AIDS, mental health, epilepsy, physical anomalies, alcohol and drug 
abuse, physical 
and sexual abuse, genetics, race and gender. Scientists and other experts 
encompassing the health, social and behavioral 
sciences, media, law, politics and economics focused on stigma as it 
relates to global public health.  They examined both what is known about 
the causes and consequences of stigma and what can be done to prevent or 
minimize its negative effects on the health of individuals and societies.
 
One outcome of the conference was a set of research recommendations for 
stigma and its relationship to a variety of global public health problems.  
The recommendations include research to:
o        Further elucidate the etiology of stigma; 
o        Investigate the health consequences of stigma;
o        Develop methodology for studying stigma with respect to health;
o        Evaluate and develop new effective interventions to deal with stigma;
o        Lay the groundwork for guidelines on ethical conduct of studies on 
o        stigmatized individuals and groups who may face further negative effects,
 including physical violence or social isolation, because of their 
participation in such studies.
 
Research Topics
 
Studies of stigma are encouraged across physical and mental health 
conditions (including addictions), care settings, groups, outcomes and 
interventions, including research on the social, economic, cultural and 
political factors in both creating and intervening in stigmatization of 
health conditions. This RFA encourages interdisciplinary studies throughout 
whenever appropriate to the research question. Ethnographic and other areas 
of social science research in particular will be necessary to fully understand 
the role of stigma within a given society 
or group and to design appropriate interventions. The ways stigma is applied, 
perceived and measured in other cultures are relevant avenues of inquiry and 
ethnographic and comparative studies are encouraged alone or as components 
of other studies.
 
Other relevant research topics include but are not limited to the following:
 
1.    The role of stigma in specific public health problems, diseases or 
disorders; and its implications for issues from etiology to interventions
 and public policy; 
 
2.    The implications of stigma for access to care and treatment, and how 
stigma affects outcomes across health conditions;
 
 
3.    Systematic studies to determine psychological, social, economic, 
cultural and political factors that operate in the creation of stigma and
 how they link to stereotypes, discrimination and mistreatment in the 
context of health problems and health care systems; 
 
4.    Approaches to ensure that medical advances, which can be used to treat
 or prevent stigmatized conditions, effectively reach appropriate populations;
 
5.    Development of tools to study and document stigma and its impact on 
accurate determination of incidence and prevalence of health conditions;
 and to estimate the risk for over- or under-diagnosis as a result of 
stigma-related influences;
 
6.    Evaluation of which interventions work for stigma-related health 
problems, the characteristics of successful interventions, demonstration
 of successful interventions that can be scaled up or generalized to 
other stigmatized public health problems and/or to other populations 
and cultures;
     
 
7.    The role of stigma in provision of health care including, quality 
and extent of available treatment and care, the quality of the 
patient/health care practitioner relationship, the role of the provider's
 attitude in perpetuating stigma and the role of stigma in disclosure of 
disease status during medical visits;
 
8.    The role of disclosure of disease in an individuals' personal or 
professional life and its relationship to perceived stigma; 
 
9.    Identification of methods to minimize (or eliminate) the consequences
 of stigma/stigmatization on the recognition and diagnosis of health 
conditions and on options for treatment and/or rehabilitation;
 
10.Social, cultural and environmental influences on perceptions of and 
reactions to stigma/discrimination among individuals, families and communities;
 and on the resources available for coping with or ameliorating its negative
 health consequences;  
 
11.The interaction of social systems including gender, culture, politics, 
economics and the law in creating stigmas and the examination of the 
interplay between different kinds of stigmas as well as the combined 
impact on individuals, families, and groups;
 
12.The involvement of social, political, economic and legal systems in 
creating appropriate, effective and culturally sensitive interventions 
to combat stigma and the negative effects of stigma;
 
13.The actual and potential roles of media in creating, disseminating 
and intervening in stigma-related attitudes and actions;
 
14.The relationship between attributions about the causes/etiologies 
of particular diseases and disorders and the degree to which those 
with, or at risk for, the disorder are stigmatized. For example: does 
the public view a disease or disorder as more or less stigmatizing when 
it may be associated with a specific genetic predisposition; is this 
perception different for different diseases and disorders, for example 
diseases such as cancer, neurological 
and neuropsychiatric disorders such as epilepsy, movement disorders, 
schizophrenia and bipolar disorder, or conditions in which there is a 
clear behavioral component (e.g. drug abuse, obesity)?
 
Specific Research Areas of Interest to Stigma and Global Health RFA Sponsors:
 
The FIC is interested in applications on stigma and health topics relevant 
to and involving low to middle income countries of the developing world. 
Special consideration will be given to meritorious interdisciplinary 
applications from, or in collaboration with, developing country investigators.
 
NCMHD would like to encourage applications that have minority health or 
health disparity focus.
 
NIAAA is interested in supporting applications that address the 
association of stigma with the detection, prevention and treatment of 
alcohol use disorders. Of particular interest are applications that address 
alcohol abuse and addiction in populations that bear a greater burden of 
stigma (i.e. pregnant women) and alcohol related birth defects (such as 
Fetal Alcohol Syndrome). Applications that address the stigma associated 
with alcohol and other health conditions, such as HIV AIDS, will also be 
considered.  Studies on the role of stigma in the development of 
alcohol-related policies and the delivery of services are also encouraged.
 
NIAID encourages applications addressing the impact of stigma on control 
and treatment of infectious diseases. Of particular interest is research 
to develop and evaluate strategies to prevent or minimize the negative 
physical, cognitive, and social consequences of HIV infection, including 
the stigmatization of persons with or at risk for HIV infection. NIAID is
 particularly interested in applications with an international/developing 
country focus.
 
NIDA is interested in supporting applications that address the causes and 
consequences of stigma in drug abusing and addicted individuals and 
populations, including the impact on stigma on the availability and provision 
of treatment and prevention services. Studies on interventions directed at 
reducing stigma in these populations are encouraged as well.
 
NIDCR is interested in supporting research to identify, prevent, or 
ameliorate consequences of stigma related to socially perceived variations 
or changes in orofacial appearance or function. Such changes may, for example, 
result from orofacial injuries or from congenital craniofacial anomalies, 
such as cleft lip and palate, disfiguring infectious diseases such as noma, 
oral facial cancers or ablative cancer surgeries affecting orofacial 
structures, edentulousness, malocclusion, or other orofacial diseases/ 
conditions.   
 
NHGRI would like to encourage applications on stigma-related issues 
related to genetic disorders.
 
NIMH encourages research on stigma related to neuropsychiatric disorders 
and research on AIDS stigma and prevention of HIV transmission and its 
consequences including descriptive cross-sectional studies of stigma, 
longitudinal research studies and intervention studies.
 
NINDS encourages research on stigma related problems across the spectrum 
of neurological disorders to reduce the burden of neurological disease 
borne by every age group and segment of society all over the world. 
 
OAR is interested in supporting applications that address the role of 
stigma and discrimination in the HIV/AIDS pandemic.  This includes basic 
research on the causes and consequences of HIV/AIDS-associated stigma and
 discrimination, as well as intervention research to ameliorate them. 
 
ORWH would like to encourage applications, across the spectrum of 
possible research topics, which include in the research design scientific 
analyses aimed at delineating sex/gender differences. The results of such 
analyses are expected to be particularly important when designing and 
testing appropriate interventions to have the best possible outcomes.
 
The HIV/AIDS Bureau, HRSA, is interested in supporting the evaluation of 
interventions to reduce stigma as a barrier to the care and treatment of 
those living with HIV/AIDS.  Examples of potential interventions include 
training of health care providers, community involvement in HIV program 
planning, and the inclusion of people living with HIV/AIDS in program 
planning and as staff or volunteers in care and support programs.  
Programs that tie decreases in stigma to increased access to care and 
improved quality of care are of particular interest.
 
The Institute of Neurosciences, Mental Health and Addiction  (INMHA) of 
the Canadian Institutes of Health Research (CIHR) is interested in 
supporting applications from Canadians or, in collaboration with the Canadian
 International Development Research Center (IDRC), in co-sponsoring proposals
 originating in and responding to priorities of developing countries and with
 a Canadian component. Eligible applications for CIHR/INMHA include those 
dealing with research on stigma related to neurological disorders, mental 
illnesses and addictions which are aimed at finding innovative, effective 
and evidence-based means to reduce discrimination, improve access to 
services and to raise public awareness through education.
 
Contact the representatives of the participating Agencies, Institutes or 
Centers (ICs) listed in the  "Where to Send Inquiries" section of this RFA 
or visit individual Agency and IC websites for more information about topics
 of interest to each. Additional research questions and other information 
of specific interest to individual participating Agencies and ICs in the 
context 
of this RFA can be found at:  http://www.nih.gov/fic/programs/stigma.html.
 
MECHANISM OF SUPPORT
 
This RFA will use the National Institutes of Health (NIH) research 
project grant (R01) and the developmental/exploratory grant (R21) award 
mechanisms.  Note that the R21 mechanism is specifically intended to 
support innovative ideas where preliminary data as evidence of feasibility 
are sparse or do not exist.  R21 grants are not intended for large-scale 
undertakings or to support or supplement ongoing research.  Rather, 
R21-supported projects are intended to serve as a basis for planning and 
strengthening future research project grant applications (R01).
 
This RFA also uses just-in-time concepts and the modular grant format 
(see 
http://grants.nih.gov/grants/funding/modular/modular.htm). Specifically, 
if you are submitting an application with direct costs in each year of 
$250,000 or less, use the modular format (modules of $25,000).  Otherwise
 follow the instructions for non-modular research grant applications. 
 
Applications submitted by foreign institutions can request facilities and 
administrative (F&A) costs up to a maximum of eight percent.  Please see 
the web site http://grants.nih.gov/grants/guide/notice-files/NOT-OD-01-028.html
 for more information on allowable F&A costs for foreign grants and domestic 
grants with foreign components.
 
This RFA is issued for fiscal year (FY) 2003 and the anticipated award start
 date is July 2003.  Applications submitted in response to this RFA may 
have a project period of up to five years for R01 and up to three years 
for R21 grant applications.  As an applicant you will be solely responsible 
for planning, directing, and executing the proposed project.
 
At this time, it is not known if this RFA will be reissued. Any future 
unsolicited competing continuation applications based on this project may 
compete with all NIH investigator-initiated applications and be reviewed 
according to the customary peer review procedures. 
 
FUNDS AVAILABLE 
 
The participating ICs intend to commit approximately $2.5 million in FY 
2003 to fund up to 12 new competitive grants in response to this RFA. 
R21 grant applicants may request a project period of up to three years 
with a total direct cost of $100,000 per year. 
 
R01 grant applicants may request a project period of up to five years. An 
applicant may request a budget up to 
1)    $500,000 direct costs per year for applications in which comparative 
or intervention studies at two or more international sites are planned, 
and which involve an international team of investigators.  No one site 
may be allocated more that half the budget.
2)    $200,000 direct costs per year for all other projects (i.e. those that
 will take place only in a single country, do not propose comparative or 
intervention studies, do not involve an international collaboration). 
 
Because the nature and scope of the proposed research will vary from 
application to application, it is anticipated that the size and duration 
of each award will also vary, with multidisciplinary collaborative, 
international