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This chapter further explores issues of patients' tenacity to shape science, through advocacy on an international level, and investigates the ways that making a disease public in Africa often entails locating it within discourses of humanitarian “crisis,” emergency, and global health prioritization. In this way, tireless patient advocates of African origin living in France created the sickle cell disease umbrella organization of the International Organization for the Fight against Sickle Cell (OILD), which succeeded in getting sickle cell anemia the attention of the World Health Organization and the United Nations in 2008. The OILD's strategy of making sickle cell visible to these multilateral institutions consisted of linking the disease to other pressing global health problems for development through means that often deployed uncertainty as “data.”

Although as recently as the 1970s patients had virtually no voice in FDA’s regulation of drugs, today patient advocates regularly use various administrative mechanisms to influence and even directly advise the agency on issues regarding drug development, access, and approval. This chapter explores a constellation of trends and events that underlie this dramatic shift, examines the current role of patients in drug regulation, and considers the future of patient-focused drug development.

In the second half of the twentieth century, disease advocacy evolved from universal campaigns to patients’ constituencies. Changes in the experience of health and illness and the nationwide expansion of political advocacy laid the groundwork for patient-led campaigns. Then, AIDS and breast cancer activists constructed a new type of disease advocacy on the foundations of the gay rights and women’s health movements. Unlike the earlier disease crusades, these movements were led by patients banding together to fight diseases that affected them personally, and they blazed a trail for patients suffering from other diseases. As patients’ activism became increasingly legitimate, disease nonprofits proliferated, patients took over congressional hearings, and disease walks and ribbons became an inescapable feature of American public life.

At a time when patient and family engagement in health care is rapidly expanding, patients and patient advocacy groups have increasing opportunities to advance shared decision making (SDM). We suggest that patients and patient groups play a critical role in building capacity for SDM in two main ways. Firstly, patients and patient advocacy organizations can prepare patients and families for realizing their roles in the SDM process by utilizing patient and family networks to educate them about SDM. They can help patients become more informed for the trade-off process by clarifying key values and preferences related to specific conditions. Secondly, patients and patient advocacy organizations can serve as partners to health care organizations, researchers, and decision tool developers as they create SDM processes and tools that are patient-centered and likely to be adopted by patients and families. Integrating SDM into health care is necessary to achieve person-centered, high quality care.

Patients can advocate for rights of self-medication in several ways. First, patients should be included in the process of drug development and should not be prohibited from developing and testing treatments on their own or privately funding medical research. Second, patients can use social media to advocate for access to new drugs and drug approval. Third, patients have a moral right to engage in civil disobedience and to illegally access and distribute pharmaceuticals. Fourth, citizens should support large-scale patient activism, such as the ACT UP and right to try movement. Fifth, officials should advocate for political reforms to protect patients’ rights of self-medication, even if such reforms lack democratic support.

This chapter analyzes ‘epistemic politics’: that is, the politics of knowledge production. It focuses particularly on the process of trans patient advocacy, looking at how individual interventions may contribute to collective efforts for discursive and material change. Drawing on examples from the depathologisation movement, it further examines how trans activists have sought to challenge the practitioner/patient power differential in both the micro-setting of the healthcare encounter and the macro-setting of medical discourse. It demonstrates that these challenges are most successful when trans knowledge are reproduced and established as credible through continual acts of mutual recognition and iterative citation across multiple spaces and contexts.

Lisa Moreno-Walton, a Tulane University emergency physician, associate professor and medical educator, writes about her profession in Chapter 24, addressing three fundamental questions. Why do emergency physicians choose emergency medicine? What are the stressors? Her final question is addressed at the end of this power essay: How can I see what is worst about people and still retain my faith in humanity? The author wryly notes that emergency physicians (EPs) are like no other for their love of action and challenge, acute care, and the life and death of practicing medicine in “real time.” Emergency medicine provides exhilaration for those who seek and thrive in it. EPs must endure an extraordinary amount of pressure to perform. Answering her final question of how one deals with the bad as well as the good, Moreno-Walton talks about the need for perspective taking and doing so with humor and sufficient self-monitoring and the help of trusted colleagues.

This chapter examines the value of physicians’ experience in calling attention to rationing and its effects on the practice of medicine and the quality of patient care. Physicians’ position in direct patient care places them in a unique position to indicate when resources are too scarce, when the health care system becomes discriminatory or unjust, and when pressures brought to bear on them excessively compromise patient advocacy or excessively constrain their freedom to use resources to meet patients’ needs. Acting as a bellwether for such aspects, however, requires physicians to overcome several conceptual and practical difficulties.

This chapter situates the CCR5 gene, specifically the Δ‎32 allele, in the contexts of four distinct yet related enterprises- race and genomics, Big Pharma, personalized medicine, and personal genomics companies. Biocapitalism has fuelled the hopes of personalized medicine (pharmacogenomics), race-based medicine, and the Americans’ fascination with their genealogies. It turns out that various institutions, the National Institutes of Health, the Food and Drug Administration, Big Pharma, personal genomics companies, and patient advocacy groups all support pharmacogenomics but for very different reasons. This chapter discusses those different, and at times mutually exclusive reasons.