Advocacy Movement Research Articles

The bleeding disease: hemophilia and the unintended consequences of medical progress

By the 1970s, a therapeutic revolution, decades in the making, had transformed hemophilia from an obscure hereditary malady into a manageable bleeding disorder. Yet the glory of this achievement was short lived. The same treatments that delivered some normalcy to the lives of persons with hemophilia brought unexpectedly fatal results in the 1980s when people with the disease contracted HIV-AIDS and Hepatitis C in staggering numbers. The Bleeding Disease recounts the promising and perilous history of American medical and social efforts to manage hemophilia in the twentieth century. This is both a success story and a cautionary tale, one built on the emergence in the 1950s and 1960s of an advocacy movement that sought normalcy-rather than social isolation and hyper-protectiveness-for the boys and men who suffered from the severest form of the disease. Stephen Pemberton evokes the allure of normalcy as well as the human costs of medical and technological progress in efforts to manage hemophilia. He explains how physicians, advocacy groups, the blood industry, and the government joined patients and families in their unrelenting pursuit of normalcy-and the devastating, unintended consequences that pursuit entailed. Ironically, transforming the hope of a normal life into a purchasable commodity for people with bleeding disorders made it all too easy to ignore the potential dangers of delivering greater health and autonomy to hemophilic boys and men.

Empowerment and partnership in mental health

Empowerment and partnership in mental health

The Transparency Fix: Advocating Legal Rights and Their Alternatives in the Pursuit of a Visible State

The administrative norm of transparency, which promises a solution to the problem of government secrecy, requires political advocacy organized from outside the state. The traditional approach, typically the result of organized campaigns to make the state visible to the public, has been to enact freedom of information laws (FOI) that require government disclosure and grant enforceable rights to the public. The legal solution has not proven wholly satisfactory, however. In the past two decades, numerous advocacy movements have offered different fixes to the information asymmetry problem that the administrative state creates. These alternatives now augment and sometimes compete with legal transparency regimes. This Article surveys and analyzes transparency advocacy campaigns and the “fix” that each proposes to the problems created by the state’s asymmetrical information advantage over the public. It sketches the history of four campaigns: the FOI movement in the U.S., the global anti-corruption movement (spearheaded by Transparency International), the digital transparency movement, and WikiLeaks. The Article offers two insights. First, although these movements share a basic set of assumptions and tell a similar policy story — secrecy is a pressing administrative problem that can be fixed with the right policies and institutional arrangements — they diverge significantly in how they understand not only the problem’s causes but the state itself. Second, and as a result, the Article unveils transparency as a contested political issue which masquerades as an administrative tool. Rooted in contestable claims about the state’s legitimacy and performance, the transparency fix leads to tendentious prescriptions about law, policy, and the state.

Small Wins Matter in Advocacy Movements: Giving Voice to Patients

In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power. It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a "Yuppie flu" disease. Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change. This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities. This approach focused, over time, on epidemiological studies, the name, the case definition, and ultimately the change in CFS leadership at the Centers for Disease Control and Prevention. Keys to this "small wins" approach were coalition building, use of "oppositional experts" (professionals in the scientific community who support patient advocacy goals) to challenge federal research, and taking advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.

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Abstract LB-83: Colorectal Cancer Coalition (C3) and Thomas P. O'Sullivan Foundation: Advocacy, Research Funding, and Education

Abstract Following the death of Doug Sharp's good friend, Tom O'Sullivan, in 2007, his widow and I established the Thomas P. O'Sullivan Foundation with the mission of raising funds for research and increasing public awareness and education about colorectal cancer. The foundation has held three annual golf tournaments which have collectively raised over $75,000. The foundation has provided funds to specific research projects at the University of Kansas Cancer Center. The Foundation is also tentatively funding an education day through the Kansas University Cancer Center in 2012 which will give doctors, scientists, staff and others a chance to speak and network with approximately 300 to 400 people who have an interest in colorectal cancer. Also, in 2012, the foundation is looking into funding a “Day at the Royals”_a major league baseball franchise in Kansas City, to increase education and awareness. Through his involvement in the fight against colorectal cancer following my friend's death, Mr. Sharp became involved in Colorectal Cancer Coalition (C3) in 2010. C3 is a national nonprofit advocacy organization whose mission is fight colorectal cancer through research, empowerment, and increased access to treatment. The Coalition was established in 2005 in order to provide focus, infrastructure and support to the growing colorectal cancer advocacy movement. Nationally headquartered near Washington, DC, the Coalition is the sole colorectal cancer advocacy organization focusing on providing a voice for patients in the Halls of Congress and in research centers and regulatory agencies throughout the country while working to educate patients and caregivers about the disease and empower them to be their own best advocate. Mr. Sharp attended C3's annual “Call on Congress” conference where he, alongside other advocates, was trained to lobby their member of Congress in Washington DC. The group specifically asked for support from the members on three legislative bills: HR 1330, the Colorectal Cancer Screening and Treatment Act; HR 1189, the Colorectal Cancer Prevention, Early Detection, and Treatment Act; and an increase in cancer research funding of $50 million for the fiscal year 2011 in the Department of Defense through an appropriations bill. Earlier this year, he was one of six individuals from across the country asked to serve on C3's Grassroots Action Committee (GAC). The GAC is a steering committee charged with growing the C3 advocacy's membership, increasing awareness for C3 activities & goals, as well as organizing the 2011 “Call On Congress”. This year, advocates will be lobbying for the same pieces of legislation. In addition to those efforts, advocates will also be seeking support for a bill to issue a US Postage Stamp to bring about awareness and proceeds to fund colorectal cancer research. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr LB-83. doi:10.1158/1538-7445.AM2011-LB-83

Political Conversion as Intrapersonal Argument: Self-Dissociation in David Brock's Blinded by the Right

Political conversion narratives are pervasive features of U.S. public discourse, yet their workings and functions are still relatively uncharted. This essay explores the rhetoric of journalist and activist David Brock, a convert from the political right to the left. I argue that Brock's controversial autobiography, Blinded by the Right: The Conscience of an Ex-Conservative, demonstrates how conversion experiences can be enacted through dissociative argumentation. In particular, the author uses a series of what I term self-dissociations to define a new identity and advance movement advocacy. The paper concludes by evaluating political transformation in relation to dissociation, identity, and U.S. politics.

Abstract B10: Nueva Vida: A support network for Latinas with cancer model and system of care delivery with an eye to community participatory research

Abstract Nueva Vida's (NV) goal is to help translate research into practice in the Latino community to shape evidence based practices and influence health policy while communicating the real needs of Latina breast cancer survivors to the scientific community. NV was founded in 1996 by Latina breast cancer survivors and health professionals to address the lack of culturally sensitive cancer support services for Latinas in the Washington, DC area. The mission of NV is to inform, support, and empower Latinas whose lives are affected by cancer, and to advocate for and facilitate the timely access to state of the art cancer care, including screening, diagnosis, and treatment for all Latinas. Since NV's inception, research participation, development, and implementation are integral to the system of care developed and provided in the community to Latina's with breast cancer. Specifically, NV's involvement in community participatory research enables the organization to influence the research agenda about breast cancer in the Latina community, particularly in the fields of psycho-oncology and access to care. NV's prioritization of research in its service delivery model provides an increased opportunity for the enrollment of Latinas in meaningful research on breast cancer with the goal of increasing not only access but awareness of the unique needs of this population. NV's pioneering programs and expertise serving uninsured/underserved Latinas with breast cancer places the agency in the role as a reliable source and key partner to work with the scientific community in the planning, designing, and development of relevant research. Nueva Vida's collaboration with respected research institutions has led to the publication of research portraying critical demographic, clinical, and psychosocial information about minority survivor's behavior. NV has acquired an important presence in the consumer cancer advocacy movement at the national level, bringing the voice of Latinas with cancer to influential tables where research and health policy are shaped. NV's research model not only sets a precedent for community research, but also establishes a better understanding of a historically misrepresented and misunderstood minority population in cancer research in the United States. NV's model of community participatory research documents best practice of service delivery which can be disseminated to other Latino communities and minorities across the United States. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):B10.

Exiled Writers, Human Rights, and Social Advocacy Movements in Australia: A Critical Fugal Analysis

Whereas much work in cultural and communication studies of “the subject” and subjectivity in language has focused on deconstructive theory and critique disconnected from actual practice and people, this paper applies an innovative cultural studies approach to a journalism reflective practice research project, conducted by the author, into human rights advocacy for cases of exiled writers in immigration detention centers in Australia. In the intellectual context of “counter-hegemonic” theories that use music as an analogy for affective social relations, the paper applies what is herein termed a “fugal critical analysis,” by drawing on both musical and psychological meanings of fugue (as musical counterpoint and psychological loss of awareness of self-identity following trauma) to discuss a human rights research project. The project includes conducting interviews with an exiled Ivory Coast journalist, and an Iranian poet-musician, and their advocates, including founding member of PEN's Writers in Detention committee whose publication of an exiled writers' anthology helped secure their releases on a case by case basis. The paper argues that direct engagement with cases of social injustice—here crystallized in the encounter of the interview—brings new relevance to cultural studies research practice that can effect significant changes in perception and action; in this case shifting consideration of “the subject” from the much publicized hypothetical “death of the author” of recent theory, to actual cases of exiled endangered writers, bringing cultural studies research into institutional spaces where cases can be humanely heard and supported, not merely critiqued and deconstructed.

Colston E. Warne Lecture: Consumer Protection 2.0—Protecting Consumers in the 21st Century

The consumer advocacy movement has achieved many successes in the past one hundred years or more but still faces pushback from powerful special interests, including preemption of state authority, and contractual limits, such as arbitration, restricting private enforcement. Further, since laws have not kept up with changes in the financial marketplace, new financial transaction protections are needed. This commentary proposes new approaches for improving consumer protection and giving new tools to consumer advocates, both on and off the Internet, and examines the battle to enact a Consumer Financial Protection Agency.

Health Financing in Brazil, Russia and India: What Role Does the International Community Play?

In this paper we examine whether Brazil, Russia and India have similar financing patterns to those observed globally. We assess how national health allocations compare with epidemiological estimates for burden of disease. We identify the major causes of burden of disease in each country, as well as the contribution HIV/AIDS, tuberculosis and malaria make to the total burden of disease estimates. We then use budgetary allocation information to assess the alignment of funding with burden of disease data. We focus on central government allocations through the Ministry of Health or its equivalent. We found that of the three cases examined, Brazil and India showed the most bias when it came to financing HIV/AIDS over other diseases. And this occurred despite evidence indicating that HIV/AIDS (among all three countries) was not the highest burden of disease when measured in terms of age-standardized DALY rates. We put forth several factors building on Reich's (2002) framework on 'reshaping the state from above, from within and from below' to help explain this bias in favour of HIV/AIDS in Brazil and India, but not in Russia: 'above' influences include the availability of external funding, the impact of the media coupled with recognition and attention from philanthropic institutions, the government's close relationship with UNAIDS (UN Joint Programme on HIV/AIDS), WHO (World Health Organization) and other UN bodies; 'within' influences include political and bureaucratic incentives to devote resources to certain issues and relationships between ministries; and 'below' influences include civil society activism and relationships with government. Two additional factors explaining our findings cross-cutting all three levels are the strength of the private sector in health, specifically the pharmaceutical industry, and the influence of transnational advocacy movements emanating from the USA and Western Europe for particular diseases.

Brain Injury and Health Policy

Legislative advocacy is a prerequisite for the development of research and community services benefiting individuals with traumatic brain injury (TBI). Dr Mitchell Rosenthal and other leaders in rehabilitation began the process of advocating for TBI services more than 25 years ago, before many in the field fully appreciated the necessity of these efforts. Since that time, substantial gains have been made through advocacy efforts on behalf of individuals with TBI and their families. This article provides an overview of the TBI advocacy movement, highlighting federal legislation resulting in appropriations for TBI services and protecting the rights of individuals with TBI. Key government entities engaged in developing states' TBI infrastructure and providing services to individuals with TBI and their families are also discussed. In addition to celebrating some of the successes that were initiated by the efforts of Dr Rosenthal and other visionaries, select shortcoming of current legislation is noted to provide insights regarding future advocacy needs.

A Model for Change: Legislative Advocacy to Improving Access for the Uninsured and Underinsured in New York State1

Advocates can successfully improve access to health care for people without health insurance. This article demonstrates the success of what began as a local advocacy effort to improve access to health care on Long Island, which later grew to become a major statewide advocacy movement. It explores the process taken by local coalition members to successfully fight for monumental public health legislation—first locally then statewide—to improve access to hospital care for the medically indigent. Using New York State as a model, it includes several approaches that could facilitate the enactment of legislation in other states. The experiences of New York advocates suggest that with focused collaborative efforts it is feasible to promote significant changes to public health laws to benefit the uninsured and underinsured.

The Importance of Children’s Environmental Health for the Field of Maternal and Child Health: A Wake-Up Call

A global public health and child advocacy movement has emerged in recent years that focuses on children’s environmental health. This movement developed out of the growing recognition that women’s and children’s exposures to environmental chemicals are widespread, health outcomes thought to be caused by environmental exposures are increasing among women and children, and governmental regulation of environmental toxicants does not take children’s unique vulnerabilities into account [1, 2]. Many MCH professionals are actively involved in this movement. They hold positions at all levels, including leadership positions, in academic centers, research programs, government agencies, professional societies, and advocacy organizations that address the impact of environmental exposures on children’s health and development [3–5]. In addition, there have been attempts to get the MCH field—as defined in the US by formal MCH training programs and their faculties, programs funded by the Maternal and Child Health Block Grant, professional associations, and this journal—to recognize the relevance of children’s environmental health to its mission. Kotelchuck called for such recognition as early as 1996 [6]. Leiss presented a course syllabus on children’s environmental health developed specifically for MCH students [7]. The MCH section of the American Public Health Association has in the past (but not presently) had an environmental health committee. The authors know of faculty at two different schools of public health who offered to teach courses on this topic under the aegis of their respective MCH departments. (Both of the MCH departments declined the offers.) These efforts have not succeeded in changing the mindset of our field, which still does not recognize the importance to its goals of women’s and children’s environmental exposures. Except for a limited focus on lead and tobacco smoke, environmental health as a topic is absent from the agendas of the major US MCH organizations. It is not present among the issues, projects, and resources highlighted on their websites, nor is it featured at their conferences [8–12]. (The 2009 MCH Epidemiology Conference will include, for the first time, a plenary session on this topic [13].) It is not included among collected MCH course syllabi [10] or in MCH textbooks [14], and it is not part of the core competencies that guide MCH training programs [15]. Environmental health issues are not mentioned in the funding announcements for training programs of the Maternal and Child Health Bureau (except for one brief mention in the schools of public health and pediatric pulmonary center guidances). Articles on this topic in the MCH Journal are rare. Clearly, children’s environmental health is not currently part of our ‘‘corporate consciousness.’’ It is true that many MCH students have access to courses in perinatal epidemiology and reproductive health that consider the role of environmental exposures. But in most Addressing women’s and children’s exposure to environmental toxicants is fundamental to achieving the goals of the MCH field. Children’s environmental health should be part and parcel of MCH training, research, and practice in the twenty-first century.

David Cantor (ed.), Cancer in the twentieth century, Baltimore, Johns Hopkins University Press, 2008, pp. vi, 350, £16.50, $25.00 (paperback 978-0-8018-8867-0).

Cancer is a twentieth-century disease. While it was not unknown before, it was in the twentieth century that it became such a dominant force, recognized as a leading cause of death and the focus of high-profile advocacy movements and a national research enterprise. By 2010, according to the International Agency for Research on Cancer, cancer will become the leading cause of death worldwide. Cancer in the twentieth century is a collection of twelve essays developed out of a conference held in 2004 at the National Institutes of Health in Bethesda, Maryland. The papers, which focus primarily on Britain and the United States, are loosely grouped into three areas—education and marketing around cancer, therapeutics, and prevention and risk. While they are distinct papers, using a variety of different historical approaches, some compelling common themes emerge. Indeed, an extensive introduction by David Cantor does an admirable job of synthesizing the various papers. Specifically, Cantor emphasizes the diversity of definitions and approaches to cancer control and cancer prevention that appear throughout the century. While early intervention was a consistent theme, opinions have diverged over where exactly to place the locus of intervention. Cantor states that the concept of cancer prevention is as old as cancer itself, but that what has changed is where prevention proponents target their efforts. For much of the century, American and British cancer prevention efforts were dominated by a focus on “early detection and treatment”. But in the 1960s and 1970s cancer prevention was “reinvented” with an emphasis on lifestyle and environmental causes of cancer, such as cigarette smoking and chemical exposures. Since then, we have seen an ongoing tug of war between these two different approaches to prevention, as they fight for a limited share of public attention, political support and financial resources. The first group of papers highlights the diversity of methods of communicating information about cancer and ways in which it is portrayed to the public. While the focus on early detection and treatment might appear to be a simple matter of education and raising awareness, these papers illustrate how public perceptions of cancer have been shaped throughout the century by the interests of advocacy groups and Hollywood movie producers. For example, Gretchen Krueger explains that while “poster children” were used to convey messages about treatment of childhood cancers, they were also intended to elicit emotional responses and financial support from viewers. While substantial progress has been made in the treatment of various cancers, papers in the other two sections of the book remind us that cancer therapy remains highly contested. At the same time, new technologies and concepts of risk have expanded the boundaries of the disease, turning otherwise healthy individuals into cancer patients. Papers by John Pickstone, and Peter Keating and Alberto Cambrosio demonstrate that, even in our age of evidence-based medicine, the methods in use by scientists and clinicians to evaluate therapies and make decisions are profoundly influenced by ad hoc historical factors. And Barron Lerner's account of Rose Kushner's dual role as patient and advocate illustrates how the challenges faced by cancer patients have altered the traditional roles of doctor and patient and created new conflicts. However, there is a central issue lurking here that unfortunately is not directly addressed by any of the papers—that is, how the growing role of science in the clinic has blurred the distinction between research and treatment. An enormous enterprise developed around cancer research in the twentieth century, and the rapid pace of research means that today novel therapies can make news before they have been approved for the market. How has the increasing authority of the scientific expert changed the ways in which patients and physicians interact? How is the line between research and treatment drawn in the case of cancer patients undergoing experimental therapies? There are some additional gaps in addressing such a broad topic. For example, it would be useful to have comparisons with countries other than the US and Britain. Yet overall, this collection of essays provides a number of compelling and novel observations on cancer in the twentieth century, and hopefully it will serve to inspire further scholarship in this area.

The Practice Of Female Genital Mutilation Among The Rural Malays In North Malaysia

IntroductionFemale genital mutilation (FGM) is a serious problem occurring very commonly in the developing world and it has serious health implications. The purpose of this study was to determine the practice of FGM among the Malays living in a rural region of north Malaysia. Methods: The study is a descriptive survey supplemented by qualitative information conducted in five villages in north Malaysia comprising entirely of Muslim Malays. Results: 597 women who experienced FGM were interviewed and they cited religion as the main reason for the practice. It was commonly performed by a traditional practitioner of the art called ‘Mak Bidan’, but the more recent FGM were done in clinics by doctors (P=0.000). All female adults interviewed wanted the practice to go on (P=0.05). Comparatively the FGM practiced in these villages was less traumatic than that practiced in most other countries. In contrast with studies conducted elsewhere, the responders in this study believed that FGM actually helps to increase the female libido. Conclusion: The public and especially the ‘Mak Bidan’s’ need to be educated on the dangers of female circumcision and the true requirements of circumcision in religion using an advocacy and social movement approach. This is best done by those from the state religious authority and it should be multisectoral, sustained and community led

Do Violent Acts Equal Abuse? Resolving the Gender Parity/Asymmetry Dilemma

This commentary revisits a core dilemma in “Controversies involving Gender and Intimate Partner Violence in the United States” by Langhinrichsen-Rohling (2010), how to reconcile gender parity in the use of force by partners with the gender asymmetry in the dynamics and effects of partner abuse. This dilemma is a byproduct of a domestic violence paradigm that confounds the normative use of violence in families and relationships and the types of partner assault and coercive control targeted by the advocacy movement. I argue that the dimensions of abuse victims present at points of service contradict the basic assumptions of the paradigm and outline an alternative model of coercive control that sets violent acts in their historical, experiential and political context.

Seeking Truth after 50 Years: The National Committee for Investigation of the Truth about the Jeju 4.3 Events

Between 1948 and 1954, a communist-led uprising in Jeju, South Korea, and the subsequent counterinsurgency campaign by the new anticommunist government resulted in an estimated 15,000 deaths. The massacres were systematically hidden from the general public and the victims' demands for truth and justice were totally suppressed during consecutive anticommunist military regimes for some 50 years. However, with democratization in 1987, a movement was started by local students, activists and journalists to find the truth about civilian massacres. After a long and painstaking journey, the first South Korean truth commission was established in 2000 to investigate the massacres and restore the dignity of victims and their family members. The advocacy movement process and the truth commission itself have gone largely unnoticed by scholars and practitioners around the world. Based on interviews and archival research, this article provides the first close examination of the South Korean transitional justice movement.

Review Essay

This review essay reflects on relationships between the NGO activism and advocacy movement and corporations. The essay does so through a review of Yaziji and Doh’s 2009 book NGOs and Corporations: Conflict and Collaboration. The review essay considers the strengths and weaknesses of the book in relationship to our understanding of NGOs. The essay emphasizes that both NGO and corporate perspectives are important in assessing NGO—corporation relationships.

A Critical Analysis of the Social Advocacy Movement in Counseling

The authors present (a) an overview of the recent literature on social advocacy, (b) results of a deconstructive analysis of the philosophical and theoretical underpinnings of this movement, (c) a critical analysis of its role and function in the profession, and (d) a call to the profession. The deconstructive analysis revealed 2 major driving forces and 5 related trends; the critical analysis revealed 9 key areas of consideration. Implications and recommendations are presented.