The Stories We Tell: Narrative, Policymaking, and the Right to Try

Abstract

Personal stories that demonstrate public health problems can be a persuasive tool to obtain public support for a legislative, regulatory, or other legally oriented solution. Personal stories associate an identified life—a specific, inherently sympathetic person who needs help now—with a problem that can be solved by public action. This association enables us to draw parallels between ourselves and the identified life—the story’s protagonist. These parallels also motivate us to act on behalf of the identified life. The more emotionally charged the story, the more likely we are to credit the narrative as an accurate and representative portrayal of the problem. But public health focuses on the health of whole populations. Public health policies protect and promote the health of statistical lives, which are both numerous and invisible, and thus lack the immediate appeal of identified lives. For these reasons, personal narratives, while a powerful motivating force, can limit appreciation of the complexity of the public health issue and proposed policy to which they draw attention and sympathy. The Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017 and its forty-one state law counterparts offer a stark example of how tragic personal stories—rather than sound data and normative justification—created laws that are at best misleading and inefficient, and at worst, dangerous to public health. This essay examines the history of investigational drugs and expanded access through some of the stories that influenced FDA policy and practice. It then turns its focus to the right to try movement and explores some of the many personal stories that were used to propel the development of right to try laws by focusing exclusively on autonomy and access. Our focus then shifts to those whose personal stories—equally compelling—are not being told in the right to try discussions. These untold stories include narratives that highlight the need for careful science and the duties of researchers; stories that illustrate systematic disadvantage and structural injustice and can help demonstrate the need for a health care system that is meaningfully available to all from the outset; stories about unidentified statistical lives; stories from those who have come to regret the exercise of their right to try; and stories by and about those who have struggled between the do-everything mindset and the desire for a good death. We discuss the concept of identified lives and why the public supports “rescuing” individuals it deems attractive and deserving, and we address the problems associated with elevating these identified lives over other untold stories and statistical unidentified lives in the context of right to try laws. This essay concludes that personal narrative has a place in public health policy generally, and in the question of access to investigational drugs specifically. Personal stories, used judiciously, can be a powerful tool for advocating for needed change. However, in the context of access to investigational drugs, crafting policy with a sole focus on the primacy of personal choice and autonomy fails to incorporate the public policy mandate to base available choices on at least a minimal amount of safety data and a high degree of information transparency. Where research directed to improving human health is at issue, contributing to generalizable knowledge—the principal purpose of research—should not be minimized because patients with life-threatening illnesses believe that they have nothing to lose by trying. While personal narratives can and should be considered, they should be combined with acknowledgment of the complexities of the investigational drug and clinical trial processes, and with awareness of the perennial and inevitable tension between providing access and collecting data supporting safety and efficacy. Even in the most tragic of circumstances, health care policy in this area deserves to be made collectively, based on careful science, good research, and a fair allocation of resources.