New Books In Public Health

Advances in medicine have made possible better treatments for widespread, familiar human illnesses like cancer, diabetes, and heart disease. Yet there are thousands of much less common diseases, most of genetic origin, each classed as rare because it afflicts only a small number of people. These patient groups were long ignored by a pharmaceutical industry that judged them too small to provide a return on the investment needed to develop an effective remedy. Yet these orphaned diseases collectively caused misery and expense, often far greater than did more common ailments, for tens of millions of individuals and their families.Forty years ago, a revolution that transformed the prospects of patients with rare diseases was lit by three sparks. The passage of the 1983 U.S. Orphan Drug Act resulted from public pressure brought by rare disease patients, their families, and advocates. The AIDS epidemic triggered additional activism, compounded when patients with the rare disease hemophilia became HIV-positive after infusion of tainted blood products. And the third spark was the emergence in the early 1980s of biotechnology companies like Genentech, Amgen, and Biogen employing then-new genetic engineering instead of conventional approaches to pharmaceutical development. Soon after, Genzyme became the first company to develop a treatment for a rare genetic disorder, Gaucher disease, which would come to transform the industry.Jim Geraghty has been a passionate participant in the orphan drug revolution since its inception--a leader in the field as a strategy consultant, biotechnology executive, and venture entrepreneur. Inside the Orphan Drug Revolution: The Promise of Patient-Centered Biotechnology (Cold Springs Harbor Lab Press, 2022) is in part a history, with eyewitness accounts of advances as they occurred and portraits of the pioneering scientists and physicians, tireless activists, and visionary business leaders who made the revolution happen. And it tells deeply personal stories of patients and parents willing to risk new, untried therapies. But Geraghty also uses his exceptional experience and vantage point to look forward to the immense promise of the newest technologies like gene therapy and gene editing for the treatment of patients today and tomorrow. He concludes with thoughtful consideration of important questions. Why do drugs to treat orphan diseases cost so much? How can we ensure they are affordable? How can their effectiveness be responsibly assessed? And how can access to them be expanded internationally? This book graphically and poignantly illustrates how far an important healthcare revolution has come and reminds us that if not nurtured, it could end before its immense promise has been fulfilled. Learn more about your ad choices. Visit megaphone.fm/adchoices

How should humans respond to our ongoing human-made climate catastrophe? To answer that question, Recall this Book turned to prize-winning climate reporter Elizabeth Kolbert, who visited Brandeis this Fall. The topic was Under a White Sky, her recent book that documents the responses to the climate crisis ranging from a form of climate engineering that shoots reflective particles into the air to cool the atmosphere, to negative emission technologies that capture and inject carbon dioxide underground."You'd have to be pretty hard-hearted not to feel called to some kind of action when you see what we humans have done." But Elizabeth wonders what the best alternatives are. Should we set aside half the earth for biodiversity? Why is it that genetic engineering has become the cultural flashpoint for fear of unintended consequences? There are no easy answers at this point. Elizabeth thinks that if you're not frightened by what's going right now, including American politics around vaccination refusal, you're not paying attention.Because this episode is associated with the annual Brandeis New Student Book Forum, first-year students Hedy Yang and Srinidhi Sriraman (who also goes by Nidhi) jump in with some thoughts.Noticing repeated mentions of Henry David Thoreau in the book, Nidhi inquires about his role in inspiring Elizabeth's writing. Hedy's question about environmental justice and the comparative agency of rich and poor countries moves Elizabeth to talk about the staggering inequities in consumption and the goal of convergence in carbon emissions. What is the mechanism by which this happens, though? Do humans have the right to implement these technologies? Is the solution to issues created by human control really more control?Mentioned in the Episode E.O. Wilson, Half Earth "Gene editing could revive a nearly lost tree"; the chestnut gene splicing debate in a recent Washington Post article. (Elizabeth has reported on Bill Powell's work) Mary Shelley, Frankenstein (1818) Cormac McCarthy, The Road (2006) Cli-fi: climate fiction in all its bleakness. For example, Margaret Atwood's Oryx and Crake. Kim Stanley Robinson, Ministry for the Future Rob Nixon, Slow Violence: how to see things happening at different time scales. Rachel Carson, Silent Spring (1962) Henry David Thoreau, "the touchstone" of American nature writing. e.g Walden (1854); dated yes, but "in most ways ahead of his time" Des Poissons dans le Desert: Elizabeth's book title in French! Listen to the episode here.Read the transcript here.Special credit and thanks for this episode goes to Hedy Yang and Srinidhi Sriraman, who took part in the audio editing and the preparation of the show notes, respectively. Learn more about your ad choices. Visit megaphone.fm/adchoices

Michael Bess is the Chancellor's Professor of History at Vanderbilt University. His fifth and most recent book is Planet in Peril: Humanity’s Four Greatest Challenges and How We Can Overcome Them, published by Cambridge University Press in 2022. This study focuses on the existential risks posed by climate change, nuclear weapons, pandemics (natural or bioengineered), and artificial intelligence – surveying the solutions that have been tried, and why they have fallen short thus far. Bess describes a pathway for gradually modifying the United Nations over the coming century so that it becomes more effective at coordinating global solutions. Planet in Peril explores how to get past ideological polarization and global political fragmentation, drawing lessons from the experiences of environmental movements and European integration.Vladislav Lilic is a doctoral candidate in Modern European History at Vanderbilt University. Learn more about your ad choices. Visit megaphone.fm/adchoices

None of us really want to relive our first encounters with COVID-19 and the disruptions to our lives, to say nothing of the anxiety and concern about the life-threatening nature of this virus as it spread around the globe. At the same time, Shana Kushner Gadarian, Sara Wallace Goodman, and Thomas B. Pepinsky ask us to reflect on our experiences and the responses to COVID-19 in the United States in their new book, Pandemic Politics: The Deadly Toll of Partisanship in the Age of COVID (Princeton UP, 2022). Kushner Gadarian, Wallace Goodman, and Pepinsky were able to put sizeable surveys into the field starting as early as March 2020, as the pandemic was taking hold in the United States and as our daily lives started to “shut down.” The three authors continued to send out the same survey to the same individuals over the course of the next two years, eventually pulling together data from six waves of surveys of some 3000 Americans. The center of the research design was to try to examine individual attitudes towards COVID-19 itself, and how people responded to the pandemic threat and the mitigation efforts. Because of the capacity to survey the same individuals over time, the authors were able to see the way that people changed their thinking as COVID itself mutated and re-situated itself in different parts of the country. The conclusion from all of this data and information is that, in the United States, partisanship swamped everything else in terms of how individuals thought about, reacted to, and responded to COVID-19.Pandemic Politics explores the way that citizens were picking up on different signals from partisan leadership because there were differing approaches to how to handle and respond to COVID-19. This was unique in the United States in comparison to other countries. Because of competing messages coming from different authoritative individuals (like the president of the United States, governors, state and local level health authorities, CDC and NIH experts, etc.) and, especially at the beginning of the pandemic, there was a significant knowledge gap as to what to do and how to keep ourselves safe, many Americans found themselves confused and concerned. As a result, the data indicates that Republicans and Democrats were hearing and seeing different information, different advice, and this continued and became more entrenched as the pandemic continued. The authors also note that the structural foundation for these partisan differences were already present before the pandemic—there were pre-existing conditions within the body politic that subsequently led to the sclerotic partisan reactions to the pandemic itself and to the efforts to mitigate the impact of COVID-19.Lilly J. Goren is a professor of political science at Carroll University in Waukesha, WI. She is co-editor of the award winning book, Women and the White House: Gender, Popular Culture, and Presidential Politics (University Press of Kentucky, 2012), as well as co-editor of the new book, The Politics of the Marvel Cinematic Universe (University Press of Kansas, 2022). Email her comments at lgoren@carrollu.edu or tweet to @gorenlj. Learn more about your ad choices. Visit megaphone.fm/adchoices

Haiti is the target of an overwhelming number of internationally funded health projects. While religious institutions sponsor a number of these initiatives, many are implemented within the secular framework of global health. In Where They Need Me: Local Clinicians and the Workings of Global Health in Haiti (Cornell UP, 2022), Pierre Minn illustrates the divergent criteria that actors involved in global health use to evaluate interventions' efficacy through examining the work of Haitian health professionals in humanitarian aid encounters.Haitian physicians, nurses, and administrative staff are hired to carry out these global health programs, distribute or withhold resources, and produce accounts of interventions' outcomes. In their roles as intermediaries, Haitian clinicians are expected not only to embody the humanitarian projects of foreign funders and care for their impoverished patients but also to act as sources of support for their own kin networks, while negotiating their future prospects in a climate of pronounced scarcity and insecurity. Minn argues that a serious consideration of these local health care providers in the context of global health is essential to counter simplistic depictions of clinicians and patients as heroes, villains, or victims as well as to move beyond the donor-recipient dyad that has dominated theoretical work on humanitarianism and the gift.Rachel Pagones is an acupuncturist, educator, and author. She was chair of the doctoral program in acupuncture and Chinese medicine at Pacific College of Health and Science in San Diego before moving to the UK in 2021. Learn more about your ad choices. Visit megaphone.fm/adchoices

We will all be patients sooner or later. And when we go to the doctor, when we're hurting, we tend to think in terms of cause and condemnation. We often look for relief not only from physical symptoms but also from our self-blame. We want from our doctors kindness under any of its many names: empathy, caring, compassion, humanity. We look for safety and forgiveness. But we forget that doctors, too, are often in need of forgiveness―from their patients and from themselves. No doctor enters the medical profession expecting to be unkind or to make mistakes, but because of the complexity of our current medical system and because doctors are human, they often find themselves acting much less kindly than they would like to. Drawing on his work as a primary care physician and a behavioral scientist, Michael Stein artfully examines the often-conflicting goals of patients and their doctors. In those differences, Stein recognizes that kindness should not be a patient's forbidden or unrealistic expectation. Accidental Kindness: A Doctor’s Notes on Empathy (UNC Press, 2022) leaves us with new knowledge of, and insights into, what we might hope for and what might go wrong, or right, in the most intimate clinical moments.Rachel Pagones is an acupuncturist, educator, and author. She was chair of the doctoral program in acupuncture and Chinese medicine at Pacific College of Health and Science in San Diego before moving to the UK in 2021. Learn more about your ad choices. Visit megaphone.fm/adchoices

In Eating While Black: Food Shaming and Race in America (UNC Press, 2022), Psyche A. Williams-Forson offers her knowledge and experience to illuminate how anti-Black racism operates in the practice and culture of eating. She shows how mass media, nutrition science, economics, and public policy drive entrenched opinions among both Black and non-Black Americans about what is healthful and right to eat. Distorted views of how and what Black people eat are pervasive, bolstering the belief that they must be corrected and regulated. What is at stake is nothing less than whether Americans can learn to embrace nonracist understandings and practices in relation to food. Starkly exposing the rampant shaming and policing around how Black people eat, Williams-Forson contemplates food's role in cultural transmission, belonging, homemaking, and survival. Black people's relationships to food have historically been connected to extreme forms of control and scarcity--as well as to stunning creativity and ingenuity. In advancing dialogue about eating and race, this book urges us to think and talk about food in new ways in order to improve American society on both personal and structural levels.Stephen Pimpare is director of the Public Service & Nonprofit Leadership program and Faculty Fellow at the Carsey School of Public Policy at the University of New Hampshire. Learn more about your ad choices. Visit megaphone.fm/adchoices

In 1997, scientists at Brookhaven National Laboratory found a small leak of radioactive water near their research reactor. Brookhaven was--and is--a world-class, Nobel Prize-winning lab, and its reactor was the cornerstone of US materials science and one of the world's finest research facilities. The leak, harmless to health, came from a storage pool rather than the reactor. But its discovery triggered a media and political firestorm that resulted in the reactor's shutdown, and even attempts to close the entire laboratory.A quarter century later, the episode reveals the dynamics of today's controversies in which fears and the dismissal of science disrupt serious discussion and research of vital issues such as vaccines, climate change, and toxic chemicals. This story has all the elements of a thriller, with vivid characters and dramatic twists and turns. Key players include congressmen and scientists; journalists and university presidents; actors, supermodels, and anti-nuclear activists, all interacting and teaming up in surprising ways. The authors, each with insider knowledge of and access to confidential documents and the key players, reveal how a fact of no health significance could be portrayed as a Chernobyl-like disaster. The Leak: Politics, Activists, and Loss of Trust at Brookhaven National Laboratory (MIT Press, 2022) reveals the gaps between scientists, politicians, media, and the public that have only gotten more dangerous since 1997.Galina Limorenko is a doctoral candidate in Neuroscience with a focus on biochemistry and molecular biology of neurodegenerative diseases at EPFL in Switzerland. Learn more about your ad choices. Visit megaphone.fm/adchoices

Opossums in the wild don't make it to the age of three; our pet cats can live for a decade and a half; cicadas live for seventeen years (spending most of them underground). Whales, however, can live for two centuries and tubeworms for several millennia. Meanwhile, human life expectancy tops out around the mid-eighties, with some outliers living past 100 or even 110. Is there anything humans can learn from the exceptional longevity of some animals in the wild? In Methuselah's Zoo: What Nature Can Teach Us about Living Longer, Healthier Lives (MIT Press, 2022), Steven Austad tells the stories of some extraordinary animals, considering why, for example, animal species that fly live longer than earthbound species and why animals found in the ocean live longest of all.Austad--the leading authority on longevity in animals--argues that the best way we will learn from these long-lived animals is by studying them in the wild. Accordingly, he proceeds habitat by habitat, examining animals that spend most of their lives in the air, comparing insects, birds, and bats; animals that live on, and under, the ground--from mole rats to elephants; and animals that live in the sea, including quahogs, carp, and dolphins.Humans have dramatically increased their lifespan with only a limited increase in healthspan; we're more and more prone to diseases as we grow older. By contrast, these species have successfully avoided both environmental hazards and the depredations of aging. Can we be more like them?Galina Limorenko is a doctoral candidate in Neuroscience with a focus on biochemistry and molecular biology of neurodegenerative diseases at EPFL in Switzerland. Learn more about your ad choices. Visit megaphone.fm/adchoices

Lessons in resilience in the second wave of the Covid-19 pandemic in India. Focusing on the second wave of the Covid-19 pandemic in India between April and December 2021, Rustom Bharucha's timely essay reflects on four interconnected realities that haunted this ongoing crisis--death, grief, mourning, and extinction. How do we cope with multiple deaths and the dislocation of rituals when the act of mourning is either postponed or denied? What roles do political surveillance, censorship, the regulation of lockdowns, and the sheer indifference to the lives of people play in the containment of civil liberties? Through vivid examples of photography, theater, dance, visual arts, and the cultures of everyday life, this meditative essay illuminates both the horror of the pandemic as well as its unexpected intimacies and revelations of shared suffering. Against the destruction of nature and the disrespect for the nonhuman, The Second Wave: Reflections on the Pandemic Through Photography, Performance, and Public Culture (Seagull Books, 2022) offers lessons in resilience through its reflections on the ethos of waiting and the need to re-envision breath as a vital resource of self-renewal and resistance.Garima Jaju is a Smuts fellow at the University of Cambridge. Learn more about your ad choices. Visit megaphone.fm/adchoices