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Books > Medicine > Clinical & internal medicine > Diseases & disorders > Infectious & contagious diseases > HIV / AIDS
Telling the story of a clinical trial testing an innovative gel
designed to prevent women from contracting HIV, Negotiating
Pharmaceutical Uncertainty provides new insight into the complex
and contradictory relationship between medical researchers and
their subjects. Although clinical trials attempt to control and
monitor participants' bodies, Saethre and Stadler argue that the
inherent uncertainty of medical testing can create unanticipated
opportunities for women to exercise control over their health,
sexuality, and social relationships. Combining a critical analysis
of the social production of biomedical knowledge and technologies
with a detailed ethnography of the lives of female South African
trial participants, this book brings to light issues of economic
insecurity, racial disparities, and spiritual insecurities of
Johannesburg's townships. Built on a series of tales ranging from
strategy sessions at the National Institutes of Health to
witchcraft accusations against the trial, Negotiating
Pharmaceutical Uncertainty illuminates the everyday social lives of
clinical trials. As embedded anthropologists, Saethre and Stadler
provide a unique and nuanced perspective of the reality of a
clinical trial that is often hidden from view.
Telling the story of a clinical trial testing an innovative gel
designed to prevent women from contracting HIV, Negotiating
Pharmaceutical Uncertainty provides new insight into the complex
and contradictory relationship between medical researchers and
their subjects. Although clinical trials attempt to control and
monitor participants' bodies, Saethre and Stadler argue that the
inherent uncertainty of medical testing can create unanticipated
opportunities for women to exercise control over their health,
sexuality, and social relationships. Combining a critical analysis
of the social production of biomedical knowledge and technologies
with a detailed ethnography of the lives of female South African
trial participants, this book brings to light issues of economic
insecurity, racial disparities, and spiritual insecurities of
Johannesburg's townships. Built on a series of tales ranging from
strategy sessions at the National Institutes of Health to
witchcraft accusations against the trial, Negotiating
Pharmaceutical Uncertainty illuminates the everyday social lives of
clinical trials. As embedded anthropologists, Saethre and Stadler
provide a unique and nuanced perspective of the reality of a
clinical trial that is often hidden from view.
This first-person account by one of the pioneers of HIV/AIDS
research chronicles the interaction among the pediatric HIV/AIDS
community, regulatory bodies, governments, and activists over more
than three decades. After the discovery of AIDS in a handful of
infants in 1981, the next fifteen years showed remarkable
scientific progress in prevention and treatment, although blood
banks, drug companies, and bureaucrats were often slow to act. 1996
was a watershed year when scientific and clinical HIV experts
called for treating all HIV-infected individuals with potent triple
combinations of antiretroviral drugs that had been proven
effective. Aggressive implementation of prevention and treatment in
the United States led to marked declines in the number of
HIV-related deaths, fewer new infections and hospital visits, and
fewer than one hundred infants born infected each year.
Inexplicably, the World Health Organization recommended withholding
treatment for the majority of HIV-infected individuals in poor
countries, and clinical researchers embarked on studies to evaluate
inferior treatment approaches even while the pandemic continued to
claim the lives of millions of women and children. Why did it take
an additional twenty years for international health organizations
to recommend the treatment and prevention measures that had had
such a profound impact on the pandemic in wealthy countries? The
surprising answers are likely to be debated by medical historians
and ethicists. At last, in 2015, came a universal call for treating
all HIV-infected individuals with triple-combination antiretroviral
drugs. But this can only be accomplished if the mistakes of the
past are rectified. The book ends with recommendations on how the
pediatric HIV/AIDS epidemic can finally be brought to an end.
How are we to appreciate and comprehend what it has been like to
live with HIV and AIDS-related illness over the past three decades
or more? When the AIDS pandemic began in the early 1980s,
scientific knowledge and medical treatment had a limiting effect on
quality of life and life expectancy for people living with HIV and
AIDS-related illness. During this era the very idea of AIDS
signified fear, panic, stigma, prejudice, acute chronic illness and
the real threat of imminent death both within and outside of a UK
context. As the global expansion of HIV scientific knowledge
continues to develop, we observe a dramatic change in how the
medical community defines HIV as a disease. The term AIDS has been
largely discarded in the West and we resist the 'death sentence'
scenario; instead we approach HIV as a chronic illness condition.
With effective HIV combination therapies now available to those who
can afford and access them, the successful management of HIV is
perceived as within our reach. This story-of-stories brings
together twenty eight long-term survivors all of whom were
diagnosed between 1981 and 1994 prior to the advancement of HIV
medicine; in some cases even before medical health checks for HIV,
such as the CD4 count and viral load test were available. It is a
passionate story-of-stories allowing the reader to become intimate
with each story-teller who shared their personal experiences of
living long-term with HIV and AIDS within a UK context: this is
their gift We unearth how our story-tellers negotiated and managed
everyday life living with this unpredictable illness condition
based on in-depth interviews conducted during 2002. These poignant
personal stories historically reflect upon long-term experiences of
women and men living alongside HIV and AIDS-related illness; they
show us how real people made sense of their lives and continued to
'live out' everyday life in the UK. It is a thorough and passionate
portrayal of personal experiences revealed by the spirited women
and men who took time out of their own lives to offer a valuable
contribution to further public understanding of this stigmatised
disease. By offering insights into different personal experiences
of those who have lived long-term with an HIV-positive diagnosis,
readers can appreciate and recognise the many ways of being
HIV-positive. Chapter one explores how concepts such as health,
illness and identity can be defined and how shared meanings differ
between people who use these concepts on a daily basis. It also
furnishes the reader with a brief history of HIV and AIDS to set
the backdrop for how we should understand the potential dilemmas of
living with a HIV-positive diagnosis during earlier more ignorant
times. Chapter two reveals how story-tellers learned of their
HIV-positive diagnosis. Chapter three examines the early years of
living with HIV and explains how our story-tellers managed
uncertainty. Chapter four discloses how sickness and health was
negotiated and experienced before HIV medicine became more
effective. In chapter five our story-tellers speak of how intimate
and sexual relationships are experienced in the context of HIV.
Chapters six and seven critically expose how long-term survivors
experienced and negotiated complex and highly toxic combination
therapies for the treatment of HIV in conjunction with
relationships with the medical profession in earlier times. Chapter
eight uncovers how networks of social support were negotiated and
experienced over time. Following this, we reveal in chapter nine
the positive and negative elements of living long-term with HIV or
AIDS diagnoses. The final chapter delves into my own experiences as
the researcher for the initial HIV study. The book offers an
extensive glossary of medical terms at the back to assist readers
in medical terms and words associated with HIV and AIDS.
The fifth edition of HIV and Aids: Education, care and counselling
covers recent changes and advances in the field of HIV and AIDS
treatment and care. These include a new emphasis on education, the
latest statistics and the interpretation thereof; new updated
biomedical information on vaccine research and testing, drug
resistance (HIV and TB) and antiretroviral therapy; the
standardised guidelines for antiretroviral treatment as recommended
by the South African Department of Health, as well as strategies
for adherence counselling. Section on children's law and it
implication, and theories of behaviour change are new. The fifth
edition contains many practical examples, exercises, activities,
case studies and tips to assure full integration of theory and
practical. It also comes with a support CD for readers.
The Ryan White HIV/AIDS Program was borne of a movement that began
with the onset of the AIDS epidemic in America. First by the tens,
then by the hundreds, then by the thousands, brave and commit-ted
people from all walks of life made a decision to get involved. Some
were public health officials; others were activists. Some were
community leaders, and others-at least until that time-were
citizens quietly living their lives. In this sixth edition of the
U.S. Department of Health and Human Services (HHS) Health Resources
and Services Administration (HRSA) HIV/AIDS Bureau (HAB) Progress
Report, we celebrate the legacy of those first responders. We also
celebrate the incredible journey we have taken since 1990, when the
first Ryan White Comprehensive AIDS Resources Emergency (CARE) Act
was passed into law. Who could have imagined in those early years
that we would one day have treatments powerful enough to forestall
the progression of HIV/AIDS? Who could have known that we would
touch so many lives? This year alone, through scores of grantees
and providers* in cities and towns across America, the Ryan White
HIV/ AIDS Program will serve well over half a million people. We
continue to face hurdles in our fight against the epidemic, but we
have made enormous progress. Highlights from this year include the
following: At $2.29 billion, FY 2010 appropriations for the Program
were the largest in Program history; Our AIDS Education and
Training Centers (AETCs) conducted more than 18,000 trainings;
Under the AIDS Drug Assistance Program (ADAP), we distributed
medications to more than 175,000 clients; We treated the people
most disproportionately affected by HIV: 73 percent of our clients
were racial and ethnic minorities, and 88 percent of our clients
had no private health insurance; We conducted research on
innovative, replicable models of HIV care to reduce health
disparities in women of color, improve access to oral health care,
establish linkages between jail settings and HIV primary care, and
expand health information technology and electronic medical
systems; We have been involved in the Healthy People 2010
broad-based national collaborative to meet the Nation's most
pressing health needs; We continue to set the standard for HIV/AIDS
care using well-respected performance measures. This response to
HIV/AIDS constitutes nothing less than a modern public health
miracle. . . and within it lie other miracles, too-like that of an
HIV-positive person living into old age, or the promising future
that unfolds before the eyes of an HIV-positive adolescent. In this
publication, you will read about many of the milestones we have
encountered in our 20-year journey and the many qualities that make
our team successful. We embarked on a quest that many would not. We
stepped up to the plate when others stepped away. And today we
constitute a powerful and cohesive force seldom seen in combating a
single disease. Our rewards lie in victory after victory over
isolation and disease and in the improved lives of our clients. It
has been an amazing and empowering journey, and it is not over. We
are trained. We are committed. We are full of resolve. And we will
not stop. In this Progress Report, we remember and we honor the
determination of those first responders and of Ryan White himself.
It was the determination to go the distance for people living with
HIV/AIDS, what-ever it took and whatever the cost. That
determination has never been more alive than it is today.
Directs the reader to the authoritative guidance established in AR
600-110, Identification, Surveillance, and Administration of
Personnel Infected with Human Immunodeficiency Virus (HIV),
pertaining to human immunodeficiency virus (HIV), pertaining to
human immunodeficiency virus (HIV) testing prior to entry on active
duty or active for training.
"Making a Difference " has been developed to help community members
to become involved in local decision making that will determine
what HIV services are available in their community. While this
Consumer Digest may be helpful to many types of community members,
its primary purpose is to support persons living with HIV disease
to be effective participants on Ryan White planning bodies. Whether
you already are involved in your planning body process or wish to
learn more before Making the Commitment to get involved, Making a
Difference can help you. The CARE Act (Comprehensive AIDS Resources
Emergency) is the Federal law that provides money to cities,
States, community-based organizations and other types of
organizations to provide HIV services. The CARE Act specifically
requires that HIV services planning bodies include persons living
with HIV disease. These Title I planning councils and Title II
planning bodies and consortia (collectively referred to as Ryan
White planning bodies throughout this document) have a big impact
on determining the types of HIV services - and which specific
programs - are available in a community. In recent years, Congress
has appropriated (or designated) funding in the range of $2 billion
per year to support HIV health services through the CARE Act. Much
of this money is distributed to States and local governments that
rely on planning bodies to help them identify who is affected by
the HIV epidemic, set priorities for the types of HIV services that
are needed, and determine how best to allocate funding among
multiple priorities. Persons living with HIV disease (PLWH) are
critical to the success of these planning processes because they
bring a perspective that is different from other members and know
firsthand what services are needed. They also can help make sure
that different groups of PLWH are included in the process and that
their service needs are not overlooked. The Health Resources and
Services Administration's (HRSA) HIV/AIDS Bureau (HAB) is the
Federal agency responsible for administering the CARE Act. HAB
produced this Consumer Digest with the assistance of PLWH members
of planning bodies and PLWH trainers at national HIV/AIDS
organizations. This document provides new information regarding the
CARE Act Amendments of 2000 related to PLWH involvement, and draws
upon other publications and materials useful to PLWH on (or
considering serving on) a planning body. This digest is intended to
provide you with information and tools to help you Make a
Difference by serving your community as an active and informed
member of a Ryan White planning body.
What ideas are overlooked in contemporary feminist politics? How do
particular issues become part of the feminist agenda? Why do we
need to think about how feminists imagine and actualize their
political objectives?This book explores these questions through the
notion of oversight—a concept used both to consider what has been
overlooked and to examine how particular objects of feminist
politics become visible in the first place. Through chapters that
focus on realities lived by trans women, Viviane Namaste explores
diverse case studies and facets of political life: women’s
labour, the archiving of everyday life, the history of HIV, urban
development and displacement, bisexualities, and the culture of
feminist activists themselves.Oversight suggests that feminists
need to engage in careful, deep reflection on how feminist
knowledge comes into being. This book will be of interest to
scholars in women’s and gender studies, community development,
sociology, social work, geography, history, and sexuality studies.
Its accessible tone, pedagogical questions, and suggested readings
make it well suited to classroom use. Its exploration of activist
culture will be of particular interest to advocates of social
justice both inside and outside of the university.All royalties
from the sale of this book will be donated to the Emergency Relief
Fund of PASAN—Prisoners’ HIV/AIDS Support Action Network. This
fund helps support individuals who are newly released from jail and
who need financial resources for housing, food, medications, and
the replacement of identity documents.
State ADAPs function as important components of Title II service
systems, yet most State ADAPs are also large and complex enough to
merit their own staff resources. As of January 2002, 78 percent of
the States have separate individuals (or groups of individuals)
administering the Title II program and the State ADAP. Given the
unique role of ADAPs in the Ryan White service delivery system,
HRSA prepared the ADAP Manual to assist ADAPs with their distinct
issues and requirements. The ADAP Manual is meant to complement the
information provided in the Ryan White CARE Act Title II Manual.
ADAP-specific information from the Title II Manual has been
reproduced and, in most cases, has been expanded upon and enhanced.
Other areas, such as the Section 340B Drug Discount Program, are
unique to the ADAP Manual. All of the information contained in this
manual is designed to assist State ADAP coordinators, Title II
directors, and others involved with improving access to HIV
medications for low-income individuals. Some chapters of the ADAP
Manual are taken directly from the Title II Manual. For a
comprehensive understanding of the Title II program, however, the
two manuals should be used together. Each chapter begins with a
chapter summary for quick reference. In addition, each chapter
includes a list of sources used and a reference list for further
information.
This Training Guide was developed to assist Title I HIV planning
councils and Title II care consortia in ensuring that all members
have the information and skills for full participation in Ryan
White Comprehensive AIDS Resources Emergency (CARE) Act planning
and implementation activities, with special emphasis on PLWH
members . Successful implementation of the CARE Act depends upon
the work of planning bodies in communities throughout the nation,
and requires that members be diverse, active, and well informed.
PLWH involvement in such planning bodies is both a legislative
requirement and a practical necessity . The CARE Act, enacted in
1990 and reauthorized in 1996, requires planning councils and
consortia to include members from affected communities, including
people living with HIV/AIDS (PLWHs). The Division of HIV Services
(DHS), which administers Title I and Title II of the CARE Act,
believes that effective programs and services must be developed
based on the input and perspectives of those for whom the services
are intended. The Training Guide was initiated to address the need
for orientation and training for planning body members who were
people living with HIV disease . A consultant to DHS developed the
initial outline. Subsequently, DHS staff and participants in the
third Community Discussion Group meeting in October 1995 reviewed,
revised, and expanded it. The resulting content outline became the
basis for this guide, prepared by MOSAICA: The Center for Nonprofit
Development and Pluralism through an interactive process with the
PLWH Response Committee of DHS and with John Snow, Inc., the Ryan
White Technical Assistance Contractor. Following review of the
draft guide, DHS decided that a Training Guide was needed not just
for PLWHs but for all planning body members. The guide therefore
provides information that can be used for providing orientation and
ongoing training to all planning body members, including people
living with HIV disease.
On February 23, 2009, a consultation meeting was held to examine
the use of peers in HIV interdisciplinary care settings. The
meeting was convened by the U.S. Department of Health and Human
Services (HHS), Health Resources and Services Administration
(HRSA), HIVAIDS Bureau (HAB). Participants included HRSA
representatives, Ryan White HIV/AIDS Program grantees, researchers,
technical assistance providers, health care professionals, program
managers and HIV positive peers. Participants heard about the ways
in which peers were being used in the fields of HIV, cancer and
diabetes to facilitate access to care, treatment and health-related
services. The purpose of the meeting, explained Steven Young, HAB's
Director of Training and Technical Assistance, was to gain greater
insight into the benefits and challenges of having peers on health
care teams, to identify the major components of an ideal peer
program, and to make recommendations regarding ways in which peer
interventions could be funded and sustained within HIV systems of
care. Young explained that in the Ryan White HIV/AIDS Program,
peers are HIV positive individuals who share identifying
characteristics with individuals or population groups receiving
care or services. Peers and clients share similar experiences and
challenges related to class, race, age, gender, language, culture
and recovery from substance abuse and/or trauma. These common
characteristics often provide peers with deep insight into the
feelings and behaviors of clients, and help them forge both
personal credibility and trusting relationship with clients. In the
field, said Young, peers are also called coaches, community health
workers and patient navigators, among other titles. HAB's
particular interest is in examining the role of peers on
interdisciplinary health care teams, whose focus in the Ryan White
HIV/AIDS Program is to engage and retain clients in high quality,
HIV care. Young emphasized the important role that peers (also
called consumers) have played in the Ryan White HIV/AIDS Program
since its inception. Peers participate in program planning
activities, serve as grant reviewers, participate on program
advisory committees and boards, and hold positions as volunteers
and staff at local health clinics and community-based organizations
(CBOs). They serve as faculty of the AIDS Education and Training
Centers program. HAB cooperative agreements and grants have
supported leadership development for peers to promote their
involvement in HIV/AIDS programs. "On an individual level, we have
heard from peers that involvement in our programs helps them feel
less isolated and gives them an increased sense of purpose," said
Young. He added that peers can help improve HIV health care
delivery and assessment of client needs, as well as reduce cultural
and linguistic barriers, and stigma. Despite widespread
acknowledgement within Ryan White that peers play a beneficial
role, their function has not been well documented or codified. As a
result, HAB is seeking guidance on: Training and support needs of
peers; Ideal roles for peers (i.e., staff, volunteers, etc);
Financial support for the peer role (grants, reimbursement, etc.);
Identification of reasonable client and organizational outcomes
related to the use of peers; and Suggestions on how peers might be
integrated into specific, legislatively identified core services,
such as medical case management and adherence support.
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