As 2021 comes to an end, we are excited to introduce two faculty members who will be joining the Center in 2022. Please join us in welcoming them to Michigan State University.
Jennifer McCurdy, PhD, will join the Center in January. Dr. McCurdy was most recently a Multicultural Postdoctoral Fellow in the Philosophy Department at the University of Alaska Anchorage. She is a critical social bioethicist whose work focuses on understanding and eliminating racial and colonial injustices in contemporary health settings and communities. Currently, Dr. McCurdy is working on a scoping review of Indigenous values in the bioethics literature, and she is co-leading a series of Hastings Center special reports on racism and bioethics.
Dr. McCurdy received her PhD in religious studies with emphasis in ethics, colonialism, and critical religious studies from the University of Denver and Iliff School of Theology in 2019. She also holds a Master of Humanities with emphasis in philosophy and bioethics, a Bachelor of Science in nursing, and an HEC-C (Healthcare Ethics Consultant-Certified).
Megh Marathe, PhD, will join the Center next fall with a joint appointment in the Department of Media and Information in the College of Communication Arts and Sciences. Dr. Marathe is currently a President’s Postdoctoral Fellow in the Department of Informatics at the University of California, Irvine. They received their PhD in information from the University of Michigan in 2021.
Dr. Marathe’s research seeks to foster dialogue between expert knowledge and lived experience in the domain of health. Their recent work showed that for both doctors and patients, the boundary between pathologic and normal events is fluid, dynamic, and porous in epilepsy and other episodic conditions. Calling an event a seizure affects the patient’s financial stability, social participation, and life aspirations, and hence, both patients and providers take an expedient approach to diagnosing seizures.
Dr. Marathe’s work advances the fields of information studies, disability studies, and science and technology studies, and generates practical implications for inclusive healthcare in the era of technologized medicine. They are actively seeking collaborators for new projects that: 1) support patients with childhood-onset cancer or epilepsy in the transition to adult care, and 2) examine how neural implants affect medical practice and patient experience. Visit Dr. Marathe’s website to learn more about their work.
Anne K. Hughes, PhD, MSW, and Dawn Opel, JD, PhD, presented at the December 2 Bioethics for Breakfast session, offering perspectives and insight on the topic “Social Determinants of Elders’ Health.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. This session was the first of a two-part series on the theme “Paradoxes of Aging: Living Longer and Feeling Worse.” The presentation portion of the session was recorded and is available to watch on our website.
Elders in the U.S. contend with chronic illness, disability, mental health disorders, and a host of other co-morbid conditions. The COVID-19 pandemic has illuminated the complex web of social, medical, and economic challenges faced by the elderly.
Anne K. Hughes, PhD, MSW, highlighted common concerns about aging and explained how those concerns affect LGBTQ+ older adults: cognitive and/or physical decline, isolation, financial/legal, living situations, and meaning making/legacy. Hughes shared the importance of health professionals asking questions rather than making assumptions when working with sexual and gender minority older adults. She also noted research showing health disparities at greater levels when compared to heterosexual older adults, even noting that much of the research data currently available is not inclusive of bisexual, transgender, or gender non-conforming older adults.
Dawn Opel, JD, PhD, presented on older adults and food insecurity in America. She addressed the invisibility of older adults experiencing hunger in America, lessons from the COVID-19 pandemic, programs and services available for older adults in Michigan, and the future of food security for older adults. Regarding food insecurity, many older adults are living alone, and they may use trade-offs such as skipping their grocery trip to instead pay the rent or utility bill. The pandemic also made visible the reliance on unpaid caregiving and volunteerism for access to food. Sharing data that projects more than 20 percent of the U.S. population will be over the age of 65 by 2030, Opel asked attendees to consider the actions needed now to invest in infrastructure for the future.
Discussion during the Q&A portion included the concept of aging in place, with multiple attendees sharing personal anecdotes about older adults in their lives who wish to remain independent in their homes. Broadly, both speakers touched on the importance of having conversations early on with older adults in our lives, in order to be as prepared as possible before there is a crisis situation. Discussion also touched on the technological divide, having conversations with primary care physicians, and potential policy improvements that could improve the burden on those in paid and unpaid caregiving roles.
Anne K. Hughes, PhD, MSW, is Director and Associate Professor in the School of Social Work at Michigan State University. She was previously the director of the PhD program. She is co-founder of the MSU Consortium for Sexual and Gender Minority Health Across the Lifespan, an interdisciplinary research consortium established within the College of Social Science in 2019. Prior to coming to MSU Dr. Hughes had 14 years of clinical practice experience. Dr. Hughes’ research focuses primarily on older adults with chronic conditions and improving healthcare services for underserved older adults, particularly LGBTQ+ older adults. Dr. Hughes has received external funding for her research from: Patient-Centered Outcomes Research Institute (PCORI), the John A. Hartford Foundation, and the National Institutes of Health. She is a Hartford Faculty Scholar in Geriatric Social Work and a Fellow in the Gerontological Society of America.
Dawn Opel, JD, PhD, is Director of Research & Strategic Initiatives and General Counsel of the Food Bank Council of Michigan, where she oversees research, data, legal, and compliance functions of the organization. A lawyer and researcher, her career has included positions in academic, nonprofit, and government sectors, and broadly, she works to build strategic partnerships for social innovation. Dr. Opel’s particular focus is developing capacity in Michigan for food-as-medicine interventions in the clinical setting, and she is currently involved in the implementation and sustainability of fresh food pharmacies for chronic disease self-management in federally-qualified health centers (FQHCs). She holds a PhD from Arizona State University and a JD from the University of North Carolina School of Law. Dr. Opel is adjunct assistant faculty at Michigan State University in the College of Arts & Letters.
How does police violence impact people’s reproductive decisions?
After the murder of Michael Brown in 2014 by police in Ferguson, Missouri, Imani Gandy, Rewire Senior Editor of Law and Policy, tweeted “I saw so many people on Twitter saying “I don’t want to have/raise Black children in this country.” That is a reproductive justice issue.” Since then, the intersections of police violence and reproductive justice have received more attention in the popular press. “Reproductive justice,” first coined in 1994 by a group of Black women, has spurned into a movement that supports “the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities.” The U.S. does not foster “safe and sustainable communities” particularly for Black, Indigenous, and other people of color, and that lack of safety is perpetuated through disproportionate and excessive surveillance, policing, and punishment by law enforcement. Black people have flocked to social media to vent about how even the fear of police violence threatens their reproductive and parenting decisions. Writer and journalist Hannah Giorgis has remarked that “Any force that systematically and unapologetically turns unconsenting Black wombs into graveyards is a reproductive justice issue.”
How do pregnant people experience police violence?
In 2020, the state-sanctioned murders of Breonna Taylor, George Floyd, Tony McDade and other Black people raised the public consciousness of an all too pernicious, long cycle of racist state-sanctioned violence in the United States. Ongoing advocacy and activism efforts were bolstered, calling for decreased use of force by officers, demilitarization of law enforcement, divestment of police department funding and redistribution to social services, and abolition. Nevertheless, since the summer of 2020, law enforcement has continued to disproportionately harm Black people, including assaulting and arresting pregnant Black women. In a recent study, Dr. Rachel Hardeman and colleagues found an 83% increase in the odds of preterm birth among those who reside in neighborhoods with high levels of police exposure, contact, and activity relative to those in low police exposure neighborhoods. After Zityrua Abraham’s assault mentioned earlier, she was in physical pain and her pregnancy became high risk. Although Ms. Abraham’s contact with police did not end in her murder, such exposure to law enforcement and their technologies of surveillance is still violent—physically, mentally, and emotionally. This is a type of “slow death”—a cumulative trauma borne out of the daily round of living, and in this case, living while Black.
It is also critical to acknowledge and address the mental, emotional, and physical ramifications of witnessing police violence. Darnella Frazier was 17-years-old when she filmed George Floyd being murdered by Minneapolis police officer Derek Chauvin. This footage helped to galvanize worldwide protests against police violence and became primary evidence in the conviction of Chauvin. Frazier has talked openly on social media and in news stories about the chronic post-traumatic stress that she has experienced from bearing witness to Floyd’s murder by police. Additionally, her then-nine-year-old cousin also witnessed the murder. Similarly, the children and other young family members of Korryn Gaines, Atatiana Jefferson, Philando Castile, and Jacob Blake witnessed or were in close proximity to the murders of their loved ones by law enforcement. Dr. Rhea Boyd’s research and advocacy acknowledges this, and she notes the glaring absence in the research literature of the impacts of young people who have witnessed their family members murdered by law enforcement. Ultimately, we must ask what are the consequences of witness and of survival; what coping practices exist and persist amidst chronic trauma; and will we ever be able to reproduce justice?
LeConté Dill, DrPH, MPH, is an Associate Professor in the Department of African American and African Studies at Michigan State University. In her work as a community-accountable scholar, educator, and poet, she listens to and shows up for urban Black girls and works to rigorously document their experiences of safety, resilience, resistance, and wellness.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Wednesday, November 24, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Last month at the 23rd Annual Conference of the American Society for Bioethics and Humanities (ASBH), Center Professor Leonard Fleck, PhD, presented on “Precision Health, Ethical Ambiguity: How Much Cancer Can We Afford to Prevent?” as part of a session on health care allocation and cost. Dr. Fleck has provided a summary of his presentation below.
“Precision medicine” and “precision health” seem to complement one another. We want an effective targeted cancer therapy for our metastatic cancer, but would rationally prefer to prevent the emergence of a life-threatening cancer–the goal of precision health. In a recent book, The First Cell: And the Human Costs of Pursuing Cancer to the Last, Azra Raza, an oncologist, argues that we are wasting tens of billions of dollars annually on extraordinarily expensive cancer therapies that yield only marginal gains in life expectancy. Raza believes these resources (not resources from heart disease or anything else) should be redirected to destroying cancer in its earliest stages, those “first cells.”
A new liquid biopsy (GRAIL) can detect 50 different cancers in very early stages by examining cell-free DNA at a cost of $800. However, 200 million anxious U.S. adults would be candidates for this test annually at an aggregate cost of $160 billion. From the perspective of health care justice, who should pay for these tests? Who should be denied access to these tests at social expense? Should only individuals with a strong family history of cancer have a moral right to this test at social expense? That would cover only 10% of cancers diagnosed in any given year.
We might say individuals known to be at elevated risk for cancer should have these tests paid for as a social expense. That would include smokers and sun worshippers at risk for lung cancer and melanoma. Would non-smokers and responsible sunscreen appliers have just cause for a grievance, i.e., paying for the irresponsible?
Would justice or efficiency require foregoing $160 billion in metastatic cancer care to pay for this preventive effort? What would a “just enough” balancing of therapeutic objectives look like? The basic economic and ethical problem is that we would be paying $160 billion annually that we knew would yield negative results more than 99% of the time. This is not obviously either a wise or just use of social resources. Moreover, this situation calls attention to the “statistical lives vs. identifiable lives” problem.
The “statistical lives” are the lives we would hope to save from metastatic cancer with the liquid biopsy test. These are nameless and faceless lives, unlike the identifiable lives that are the patients with metastatic cancer who want access to the hyper-expensive targeted therapies that might extend their lives a few months, maybe an extra year or so. In contrast, the hope is that each statistical life saved would result in extra decades of life for that individual.
A key ethical question is whether statistical lives and identifiable lives in this situation are of equal moral weight. Or are the identifiable lives with metastatic cancer more “morally worthy” of social resources because they are suffering and near dying? Or, as Raza contends, are we ethically obligated to shift resources from metastatic cancer patients (who have been effectively treated up to this point) to preventive efforts associated with liquid biopsies hoping to save more lives and life years? How do you, my currently healthy readers, think we ought to decide?
The COVID-19 pandemic has brought to public attention the phrase “crisis standards of care.” This is not a phrase that is especially meaningful to most members of the public. My concern, speaking as a medical ethicist, is that it is not intended to be especially meaningful for the broad public. Instead, it is what I would describe as a bit of “antiseptic rhetoric” intended to cleanse the public conscience of otherwise troubling ethical choices health professionals might be required to make during a pandemic.
Of course, antisepsis is generally good. It prevents potentially life-threatening infections. However, very aggressive antisepsis aimed at creating a hyper-sterile environment can result in an immune system that is “uneducated,” ill-prepared for a powerful pathogen that manages to elude our antiseptic efforts. My concern is that the use of antiseptic rhetoric around COVID-19, as with the phrase “crisis standards of care,” weakens the capacity of the public to understand and thoughtfully address the troubling and tragic ethics issues generated by COVID-19 in both the health care and political sectors of our social life.
The antiseptic meaning of “crisis standards of care” is that there are too many patients who need care all at once, and consequently, the normal expectations for timely and effective care will not be met. Delays will occur. As a patient, you might be parked in a hallway on a gurney for a few hours until a room becomes available. This is annoying, but hardly cause for an anxiety attack. However, this is very far removed from the reality that patients are facing in Idaho, Montana, Georgia, Florida, and several other states where the Delta variant of COVID-19 has overwhelmed the hospital system.
I was prompted to think about crisis standards of care by a recent article in the New York Times, “’I just cry all the time’: Non-Covid patients despair over delayed care.” The article tells the story of Mary O’Donnell, age 80, who needed a five-hour back surgery procedure that was postponed indefinitely due to the hospital being filled up. She was going to need multiple days in the hospital after surgery. Her concern was that she would be permanently impaired if the surgery were not performed very soon.
Of course, the person who would occupy the bed she needed would be a COVID-19 patient with a life-threatening condition. That person might survive, but maybe not. Mary O’Donnell did not have a life-threatening condition. She was “merely” at risk for losing the functioning of her legs. That is a terrible sentence to write, but it was the medical and ethical reality. This is rationing: painful, tragic, unfortunate, and sometimes unjust.
Patients with advanced cancers or advanced heart disease needing surgical treatment will have those surgeries postponed with unknown consequences. Maybe a delay of those weeks will make no difference for that cancer; it will be effectively managed. Maybe the cancer has already metastasized, and the fate of that patient is sealed. Maybe the cancer will metastasize in those intervening weeks. Again, this is what “crisis standards of care” means in practice. It is health care rationing that necessarily implies problems of health care justice.
If there are not enough ICU beds or ventilators, then those scarce life-saving resources will go to patients who are judged most likely to survive. How is that judgment made? Can the public be confident it is made fairly? Is it ethically more important to save the most lives or the most life-years? This is a critical distinction.
Another phrase that has attracted some media attention pertains to a hospital invoking “universal do-not-resuscitate orders” for COVID-19 patients. Some right-wing media sites have warned COVID-19 patients that they must stay away from hospitals because hospitals have agreed not to treat COVID-19 patients but just let them die. No doubt those same sites are falsely pushing ivermectin as a treatment you can administer to yourself in the quiet of your own bedroom. What the phrase “universal do-not-resuscitate order” does mean is that if a COVID-19 patient codes in the ICU, there will be no effort to resuscitate them. The justification for a policy that would likely elicit anxiety, anger, and horror in much of the public is that such an effort would put at risk the lives of the health professionals attempting that effort. Further, the patient would most likely, not certainly, die despite that effort.
Here is a hard question: if you are a patient with a cancer or advanced heart disease needing surgery that has been postponed, how should you feel about that policy? You can survive, you want to survive, and you need that bed. Alternatively, if you are a COVID-19 patient in the ICU with a somewhat uncertain prognosis, how should you feel about that policy? These are the painful realities of crisis standards of care. This is health care rationing.
These are policies and policy choices that need public awareness, public understanding, and public legitimation. This requires hospitals and political leaders willing to take the risks associated with informing and engaging the public in discussion of the hard ethical choices that COVID-19 has thrust upon us. Antiseptic language may be innocuous (and politically desirable). However, the immune system of a democratic society, public reason, requires robust, honest, exacting language to strengthen its ability to resist infectious obfuscation and viral disingenuousness.
Leonard M. Fleck, PhD, is Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Wednesday, October 20, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Assistant Director and Associate Professor Karen Kelly-Blake, PhD, recently presented at the 116th American Sociological Association Virtual Annual Meeting, held August 6-10, 2021. Dr. Kelly-Blake was an invited panelist for the session “Racism: A Pre-existing Health Condition.” Her presentation was entitled “A Question of Justice: The Covert Costs of Racial/Ethnic Concordance in the Medical Workforce.”
Over the past century U.S. medical workforce demographics have shifted. Moving away from a white male dominated profession, there has been a “widening capacity” trend toward increasing gender, ethnic, racial, and linguistic representation. Commonly, that push is linked to notions of desirable doctor/patient identity matching, described here as “concordance.” Notably that trend is accompanied by rhetoric covertly shaping the professional lives of Black, Indigenous, and Latino physicians underrepresented in medicine (URiM). Improving patient trust, access and health outcomes are frequently mentioned benefits figuring into such parity rhetoric. Indeed, URiM physicians provide a substantial proportion of medical care to the underserved. Quite possibly such workforce patterns reflect focused altruism to serve “one’s own.” Paradoxically, policy initiatives that influence URiM’s futures in the medical workforce may well carry hidden unanticipated consequences.
Dr. Kelly-Blake reported on the findings of a 2000-2015 scoping literature review considering the nature of medical workforce policy strategies. She posed the question of whether those strategies might not unevenly affect URiM physicians, selectively placing service expectations not similarly placed on their White counterparts. Findings suggest that selectively placing service expectations not similarly placed on their White counterparts along with unexamined assumptions of racial/ethnic concordance between patient and physician may place an undue burden on URiMs disproportionately tasked with ameliorating persistent inequities in our health care system.
Trauma, Community Health and the Criminal Legal System
Why should we care about the effects of incarceration and policing on communities and their health? This virtual panel discussion and audience Q&A on the relationship between the criminal legal system, structural racism, and health will also explore terminology—including “mass incarceration”—and explore different ways of thinking about trauma.
This webinar is co-presented by the Michigan State University Center for Bioethics and Social Justice and the Henry Ford Health System Health Disparities Research Collaborative. Panelists include Jennifer Cobbina, PhD, and Christina DeJong, PhD, from the Michigan State University School of Criminal Justice, Carmen McIntyre Leon, MD, from Wayne State University School of Medicine, and Center for Bioethics and Social Justice Director Sean A. Valles, PhD. Henry Ford Health System Health Disparities Research Collaborative Director Christine Joseph, PhD, will moderate the session.
This webinar is free to attend and open to all individuals. A recording will be available following the event.
About the panelists
Jennifer Cobbina is an Associate Professor in the School of Criminal Justice at Michigan State University. She received her PhD in criminal justice at the University of Missouri-St. Louis in 2009. Her primary research focuses on community responses to police violence and the strategies that communities employ to challenge police expansion and end state sanctioned violence. Her research also examines the intersection of race, gender, and how neighborhood contexts shapes crime and criminal justice practices. Finally, her work focuses on corrections, prisoner reentry and the understanding of recidivism and desistance from crime. She is the author of Hands Up, Don’t Shoot: Why the Protests in Ferguson and Baltimore Matter and How They Changed America.
Christina DeJong is an Associate Professor in the School of Criminal Justice at Michigan State University. Her research interests focus on gender, sexuality, crime, and justice. Dr. DeJong’s current work is focused on Queer Criminology, specifically the homicide of transgender people in the United States and how sexuality shapes juvenile offending. She is also currently studying bullying and misconduct in academe. Dr. DeJong received her PhD in Criminal Justice and Criminology from University of Maryland. She is an associated faculty member with the MSU Center for Gender in Global Context.
Carmen McIntyre Leon completed undergraduate studies at the University of Michigan, attended Wayne State University for medical school, and the Medical College of Pennsylvania (now Drexel) for psychiatry residency and NIMH research fellowship. She worked as medical director for partial programs, inpatient units, research units, and SUD/Methadone programs before returning to Michigan, eventually co-founding Community Network Services, an adult community mental health provider in Oakland County. After a brief stint in New Zealand she returned to Detroit to help lead the newly created Detroit Wayne Mental Health Authority as the Chief Medical Director. She is now the Associate Chair for Community Affairs and Director of Public Psychiatry Fellowship with the Wayne State University School of Medicine Department of Psychiatry and Behavioral Neuroscience; and Chief Medical Officer for the Michigan Department of Corrections.
Sean A. Valles is director and associate professor in the Center for Bioethics and Social Justice in the Michigan State University College of Human Medicine. Dr. Valles is a philosopher of health specializing in the ethical and evidentiary complexities of how social contexts combine to create patterns of inequitable health disparities. His work includes studying the challenges of responsibly using race and ethnicity concepts in monitoring health disparities, scrutinizing the rhetoric of the COVID-19 pandemic as an ‘unprecedented’ problem that could not be prepared for, and examining how biomedicine meshes with public health and population health. Dr. Valles received his PhD in History and Philosophy of Science from Indiana University Bloomington.
Christine Joseph is a Senior Epidemiologist in the Department of Public Health Sciences at Henry Ford Health System. Her research interests include racial/ethnic health disparities, adolescent health, asthma and allergic disease, adherence, and school-based health management. She has experience in the design and implementation of community-based and pragmatic clinical trials. Dr. Joseph has worked on a variety of studies focusing on vulnerable populations and social determinants of health, and has publications in the areas of asthma, food allergy, sleep, LGBTQ health, and health literacy.
By Larissa Fluegel, MD, MHS, and Sean A. Valles, PhD
The U.S. COVID-19 pandemic summer surge has inspired a public search for answers as to why wide vaccine availability has not been sufficient to prevent a new wave of infections. Certain answers are plausible, such as blaming the surge on some combination of the more infectious delta variant spread, vaccination rates remaining too low on average and excessively low for some populations, a relaxation of formal disease control restrictions, as well as more nuanced informal social habits such as diminished mask-wearing, more indoor parties, etc. Yet others cast blame onto a much less plausible target: immigrants.
Florida Governor Ron DeSantis blames President Joe Biden for being too lax on the southern U.S. border immigration enforcement, suggesting that Biden has been “helping [to] facilitate” the pandemic. Governor Greg Abbott of Texas took things further, ordering that state law enforcement could “begin pulling over vehicles whose drivers are transporting migrants who pose a risk of carrying COVID-19.” Both of these responses to the pandemic spread are unethical, incoherent, and ineffectual. Accusations against Latin American immigrants are unethical and misguided.
For many reasons, blaming those immigrants crossing the southern U.S. border for negative health outcomes is problematic. Such targeted blame is dehumanizing to immigrants—it promotes negative stereotypes that perpetuate discrimination, mistreatment and health disparities, and by extension, it is detrimental to non-immigrants’ health. Moreover, it is a form of blame shifting that prevents authorities and the public from effectively taking responsibility for community-wide problems.
Blaming immigrants is dehumanizing
There is a long history of dehumanizing immigrants to the U.S., although such dehumanization is generally done selectively. Immigrants such as Charlize Theron and Albert Einstein are treasured, while others are despised for having the “wrong” skin color, accent, occupations, and so on. Dehumanizing and targeting immigrants has been part and parcel of U.S. history, from 19th century church-burning riots that terrorized Irish immigrants, and the overtly racist Chinese Exclusion Act, to current cases of medical abuse and neglect in migrant detention centers. Philosopher David Livingstone Smith traces these sorts of systemic cruelties to a process of dehumanization in which we find ways of convincing ourselves to think of certain groups of people as somehow less than human. To convince ourselves we seek justifications such as depicting immigrants as vermin infecting or invading a country. According to Livingstone Smith, such depictions then give us permission to act aggressively against those groups and to “exclude the target of aggression from the moral community.”
In sum, we find ways to give ourselves permission to dismiss the ethics of how we treat certain groups of people. With such misplaced permission, we decide that certain groups, in this case select immigrants, don’t count as fellow humans worth caring about, and so abuse doesn’t really count as abuse. It’s this sort of misguided logic that also explains Governors Abbott and DeSantis’ school mask requirement bans. Paradoxically, their purported attempt to reign-in government restrictions on individuals simultaneously reveals disregard for the ways in which harsh immigration enforcement strategies negatively impact the lives of immigrants.
Blaming immigrants promotes negative stereotypes that perpetuate discrimination, social mistreatment, and unjust health disparities. Since early in the pandemic, anti-Asian racism and xenophobia mixed in with COVID-19 politics has led to a worldwide phenomenon of hate crimes against anyone appearing to be of Asian descent, and vicious expressions of misguided blame directed at anyone from the same vague region as where the pandemic originated. Historically, and erroneously, people in the U.S. have associated immigrants with human disease and contagion. Immigration authorities have long scrutinized immigrant health when deciding who can enter or remain in the U.S. Additionally, there is a false perception that immigrant illnesses are predominantly acquired before entry to the U.S.; it is instead most often the case that immigrants tend to struggle with worsening health as they spend more time adopting U.S. cultural norms, including unhealthy eating habits.
Stereotypes about “unsanitary” immigrants represent cruel and unjustified blame shifting. For example, consider meat processing plants which have been hot spots for COVID-19 outbreaks. Staffed predominantly by an immigrant workforce, those workers face abusive and unsanitary working conditions (an open secret in the industry for over a century) that foster disease outbreak. Laying blame for this suffering on immigrant workers, or immigration generally, is a horrendous ethical mistake. Statements by public figures like Governors Abbott and DeSantis contribute to morally skewed views about immigrant health.
Unhealthy negative stereotypes hurt people and cost all Americans a lot of money
Another pragmatic consideration is how those immigrants who do fall ill interface with the U.S. health care system. Negative stereotypes about immigrants among health care providers lead to substandard and/or improper care. In fact, the anticipation of being mistreated coupled with fear among those with an undocumented immigration status serve to dissuade immigrants from seeking needed care. Such fears might even discourage some from getting the COVID-19 vaccine. In this way, blaming immigrants contributes to worsening the pandemic. (A related irony is that nearly 1 in 3 doctors are themselves immigrants.)
There is a public health concern to this sequence. Delaying or avoiding care harms immigrants as well as those around them. To avert transmission, contagious diseases need to be treated in a timely manner. Not doing so leads to an underestimation of actual disease distribution and burden. A correct estimation is necessary to determine the right amount of resources and timely measures necessary to contain them. It is a waste of public resources to have those in need use emergency rooms for care that, if identified and delivered in a timely manner, could have been averted before the situation worsened. Part of the motivation for the Affordable Care Act was to increase access to regular necessary care, yet undocumented immigrants were excluded from benefitting from the Act, despite the fact that providing coverage would have improved public health and probably saved the public money as well. For example, consider strep throat, a condition that is easily treatable with inexpensive antibiotics. Left untreated, strep throat can get complicated and potentially cause serious long-term heart problems. Untreated strep throat might drive a person to seek care in an emergency department. Yet another example is an untreated dental cavity that might lead to a dental abscess or a deep skin infection of the mouth and neck, again possibly resulting in an emergency room visit. Once there, correct diagnosis would require fluid cultures and expensive MRI or CT imaging. The cost of delayed care is borne by all of us. Some combination of insurance companies, hospitals, or government pay those excess fees, passing along costs to everyone else.
We, the authors, come to this issue as people who have committed their professional lives to making healthcare and health policy more humane—seeking to help our future physicians and our colleagues treat patients as complex human beings deserving of care, rather than revenue streams to be maximized. Similarly, we see immigration discussions falling prey to the same mistake so common in healthcare, wherein powerful decision-makers, such as politicians, lose sight of their shared humanity with the people whose lives depend on them. We need to demand better from our political leaders and importantly, we need to speak out when politicians dehumanize immigrants.
Larissa Fluegel, MD, MHS, is an Assistant Professor with the Center for Bioethics and Social Justice and the College of Human Medicine at Michigan State University where she teaches social context of clinical decisions.
Sean A. Valles, PhD, is Associate Professor and Director of the Michigan State University Center for Bioethics and Social Justice. He is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era (Routledge Press).
Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Thursday, September 2, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.
“Housing security’s place in a ‘Culture of Health’: Lessons from the pandemic housing crises in the U.S. and England”
Center Director and Associate Professor Sean A. Valles, PhD, gave a seminar last month for The London School of Economics and Political Science Department of Philosophy, Logic and Scientific Method. Valles presented “Housing security’s place in a ‘Culture of Health’: Lessons from the pandemic housing crises in the U.S. and England” as part of the department’s “Conjectures and Refutations” series.
Dr. Valles has provided a summary of his talk below. A recording is available to watch on YouTube via the LSE Philosophy channel.
People experiencing homelessness had been suffering extreme health and economic hardships before the COVID-19 pandemic, and even more so during it. The notion that housing is a human right is gradually picking up momentum in both the U.S. and England. And that ethical recognition is combining with a growing set of scientific evidence of the effectiveness of “housing first” policies, which provide stable long-term housing to people experiencing homelessness, rather than shuffling people in and out of temporary shelters. Every person ethically deserves safe housing, and failing to provide this has also resulted in a system that cruelly (and at great expense) pushes suffering people into emergency rooms and prisons.
England earned praise for its “Everyone In” program, which was aimed to provide safe housing for every person experiencing homelessness beginning early in the pandemic. By contrast, cities across the U.S. continued defying CDC recommendations by bulldozing temporary encampments set up by people experiencing homelessness, including in Lansing. Meanwhile both the U.S. and England banned evictions of renters who fell behind on their rent during the pandemic, but both also failed to make realistic long-term plans for how to secure housing and income for people who have no way of paying past-due rent once the eviction bans expire. On both sides of the Atlantic, the pandemic inspired governments to stumble toward recognizing how essential housing is for good health in general and also dealing with this fact. The challenge now is to keep up the momentum, and push for universal housing, since trying to survive without secure housing was already difficult before the pandemic, and will remain so after it ends.
On June 7, 2021, the United States Food and Drug Administration (FDA) approved a controversial new Alzheimer’s Disease drug—aducanumab—to be sold by Biogen under the name Aduhelm. Alzheimer’s disease is estimated to currently be affecting over 6 million Americans plus their families, who must watch the mental decline of their loved ones and provide increasing levels of care as the disease progresses.
Unfortunately, the approval of Aduhelm has generated a large amount of controversy because the FDA approval came despite the rejection of the studies of the drug’s efficacy by the FDA advisory committee. The opposition to the FDA’s approval has been so heated that three of the eleven-person advisory committee have resigned.
Detailed discussions of the science behind Alzheimer’s disease and the Aduhelm clinical studies can be found elsewhere. In summary, as Alzheimer’s disease progresses, protein plaques—amyloid and tau—build up in the patients’ brain. The progression of these plaques correlated with decreased mental acuity in patients. Therefore, drug candidates that target these plaques have been of interest to scientists for many years.
While the clinical data associated with Aduhelm supported a decrease in brain plaques in early-stage Alzheimer’s patients, the data did not show that decreasing plaques by the drug resulted in slowed progression of Alzheimer’s disease. In addition, the data showed that some patients have brain swelling as a result of the drug. Using this data, the FDA approved Aduhelm for broad use for all Alzheimer’s patients.
FDA Approval Process
Generally, to gain approval to sell a new drug, a company will complete a series of clinical trials to determine if a drug candidate is safe and effective for a given disease. Safety and efficacy are balanced against each other and consideration is given to the severity of the disease to determine if approval will be granted. As an example, a highly effective drug that is also highly toxic would not be approved as a simple headache remedy but may be approved as a treatment against a fast-growing, inoperable form of brain tumor. Conversely, an ineffective drug should never be approved no matter how safe it is—such are the wares of snake-oil salesmen of the past.
The FDA also has an Accelerated Approval pathway to allow drugs for diseases that have few treatments to proceed to market more quickly. It is under this accelerated path that the FDA approved Aduhelm. The accelerated pathway allows companies to use biomarker changes rather than disease improvement to show efficacy in the drug approval process. The FDA used the decrease in amyloid plaques as the biomarker for approval of the new Alzheimer’s drug—despite the fact that the clinical trial studies were submitted to show efficacy against disease progression. Moreover, the advisory committee was not informed of potential accelerated approval. Only after the clinical trial data was found unacceptable by the advisory committee did the FDA switch to the accelerated approval pathway. Perhaps most importantly, other drug candidates have been abandoned after amyloid plaque removal did not halt progression of the disease, so biomarkers may not be effective ways to judge the halt of Alzheimer’s progression.
The accelerated approval is, in effect, a contingent approval. Biogen will be allowed to sell Aduhelm, but it must gather data as to whether the drug is actually effective. If clinical data does not eventually support reduced disease progression, then the FDA can rescind the approval, and Biogen will no longer be able to sell the drug. The FDA’s approval of the Aduhelm may be harmful in the long run for several reasons.
Trust in FDA
The move by the FDA to approve Aduhelm could lead to a decrease in trust in the agency. First, the controversial nature of its approval over the recommendations of the scientists who reviewed the data created a controversy that is playing out across the news media as people wonder why an ineffective drug has been approved.
In fairness, the accelerated approval process is contingent, but due to the way the accelerated approval was used scientists did not have the opportunity to weigh-in on the use of biomarkers in that approval. That way in which the accelerated approval process was tapped, only after the regular approval process seemed doomed to fail, may well erode trust that the FDA evenly applies its own rules. Additionally, it is very difficult to rescind these accelerated approvals, and if the drug approval is rescinded public perception will likely be highly negative. Finally, according to Biogen it may take up to nine years to gather the data to complete the required studies.
New Drug Development
Aduhelm is not the only drug candidate in its class in clinical trials for Alzheimer’s disease treatment. Other drug candidates that include patients who receive a placebo rather than the drug candidate are undergoing clinical trials. Since these studies tend to be double-blinded—neither the doctor nor the patient knows if the drug or the placebo has been administered—patients will likely drop out of these other studies in order to be assured of receiving some drug. Thus, Alzheimer’s drug development will be slowed, in favor of a drug that has no demonstrable efficacy. Additionally, these new drug manufacturers may also ask for similar approval, based on biomarkers that may not be indicative of clinical effectiveness.
Patients and Alzheimer’s advocates pushed for approval of this drug. But a drug with contingent approval may give these patients and their families false hopes. We have seen in Right to Try legislation–legislation allowing patients to use un-approved drugs in the FDA approval pipeline–both a fundamental lack of understanding of the FDA approval process as well as the desperation of patients for whom there are no clear treatment options. I have argued before that Right to Try laws prey on the emotionally fragile. Here the FDA’s controversial accelerated approval may have the same result—patients clamoring for a drug that does not work.
In addition, the cost of the drug will be borne by insurance companies that may well decide not to cover the drug. While the drug is approved for all stages of Alzheimer’s, clinical studies were only aimed at early-stage disease. In effect, the FDA has shifted its responsibility as gatekeeper for effective drugs to insurance companies for whom profit is a driving force.
The cost of Aduhelm in light of the lack of efficacy data presents its own problems. Biogen has indicated that the average yearly cost of Aduhelm will be $56,000, not including the cost of doctors, hospital or clinic visits, and supplies to receive the infusions, or the cost of brain scans to monitor for swelling and brain bleeds as side effects. This cost, like most drugs, will be passed on to consumers through direct payments, increased insurance premiums, and higher budget expenditures for Medicare and Medicaid. One study reported that if 500,000 people on Medicare are prescribed the drug, it would cost $29 billion per year with copays of over $11,000 per year.
Biogen defends its pricing of the drug. According to its own press release, Biogen “established the price of Aduhelm based on the overall value this treatment is expected to bring to patients, caregivers, and society.” This expected value seems high for a drug that may not work but admittedly reflects normal drug company calculations in a system where insurance covers most prescriptions and the uninsured either do without or rely on the generosity of the drug company.
Because FDA approval is contingent, the FDA can remove the drug from the market if the required data do not show efficacy. However, the money paid for the failed treatment regime will not be refunded. Patients are paying to take this risk.
In the end, the FDA’s approval of Aduhelm will impact the way the agency is perceived, and the way other companies approach the drug approval process. Neither of these changes will be for the better.
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