Miami Downtown, FL, USA - MAY 31, 2020: Woman leading a group of demonstrators on road protesting for human rights and against racism.

Intentional Commitments to Diversity, Equity, Inclusion Needed in Health Care

By Eloho E. Akpovi

“They told me my baby was going to die.” Those words have sat with me since my acting internship in OB/GYN last summer. They were spoken by a young, Black, pregnant patient presenting to the emergency room to rule out preeclampsia.

As a Black woman and a medical student, those words were chilling. They reflect a health care system that is not built to provide the best care for Black patients and trains health care professionals in a way that is tone-deaf to racism and its manifestations in patient care.

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Prison watch tower.

Government Report Finds Care Deficits for Pregnant People in Federal Custody

By Elyssa Spitzer

Pregnant and postpartum people in the custody of the Bureau of Prisons (BOP) and U.S. Marshals Service receive care directed by policies that fail to meet national standards, according to a report recently issued by the Government Accountability Office (GAO). 

This, despite the fact that, incarcerated women are among the most vulnerable people, according to the American College of Obstetricians and Gynecologists. In the GAO report’s terms, incarcerated women: “often have medical and mental health conditions that make their pregnancies a high risk for adverse outcomes, which is compounded by inconsistent access to adequate, quality pregnancy care and nutrition while in custody.”

Notably, the report found that the BOP and U.S. Marshals’ policies failed to satisfy the national standards — to say nothing of the gaps that may exist between written policy and the care that is, in fact, provided. Read More

Doctor or surgeon with organ transport after organ donation for surgery in front of the clinic in protective clothing.

How to Encourage Organ Donation

By James W. Lytle

Last week, Bill of Health published a Q&A with Phil Walton, the Project Lead for Deemed Consent Legislation with the National Health Service Blood and Transplant Division, and Alexandra Glazier, the President/CEO of the New England Donor Services.

In the first part of this conversation, Walton and Glazier described the various frameworks undergirding organ donor registries in their home countries. Walton detailed the “deemed consent” or “opt-out” registry employed by Wales and England, while Glazier detailed the opt-in, prompted choice framework in the U.S.

In this second installment, Walton and Glazier discuss strategies to encourage organ donation, regardless of the opt-in or opt-out framework. The conversation also touched on health disparities and strategies to address them.

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Sign that reads "Racism is a pandemic too."

Editor’s Choice: Important Reads on Race and Health

By Chloe Reichel

Racism was embedded in the founding of the United States and has persisted in virtually all aspects of our society through the present day.

In 2020, structural racism was made especially apparent in the disproportionate toll the COVID-19 pandemic has taken on communities of color, which can be traced back to the social determinants of health, and in grotesque displays of police violence, such as the killings of Breonna Taylor, George Floyd, Ahmaud Arbery, and Elijah McClain.

Racism is the public health issue of our time, after having been woefully un- or under-addressed for centuries. The following posts, which were published on Bill of Health this year, highlight some of the most pressing issues to confront, as well as potential ways forward.

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Society or population, social diversity. Flat cartoon vector illustration.

Unequal Representation: Race, Sex, and Trust in Medicine — COVID-19 and Beyond

By Allison M. Whelan*

The COVID-19 pandemic has given renewed importance and urgency to the need for racial and gender diversity in clinical trials.

The underrepresentation of women in clinical research throughout history is a well-recognized problem, particularly for pregnant women. This stems, in part, from paternalism, a lack of respect for women’s autonomy, and concerns about women’s “vulnerability.” It harms women’s health as well as their dignity.

Over the years, FDA rules and guidance have helped narrow these gaps, and recent data suggest that women’s enrollment in clinical trials that were used to support new drug approvals was equal to or greater than men’s enrollment. Nevertheless, there is still progress to be made, especially for pregnant women. In the context of COVID-19 research, one review of 371 interventional trials found that 75.8% of drug trials declared pregnancy as an exclusion criteria, a concerning statistic given that recent data suggest that contracting COVID-19 during pregnancy may increase the risk of preterm birth.

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Miami Downtown, FL, USA - MAY 31, 2020: Woman leading a group of demonstrators on road protesting for human rights and against racism.

Understanding the Role of Race in Health: Conclusions from the Symposium

By Craig Konnoth

In my introductory post to this symposium, I suggested that medicine and health tapped into a discourse of power that had the power to either harm or help. Medicine can trigger benefits in the law — what I call “medical civil rights,” where advocates rely on medicine’s language to trigger both formal legal rights and public advantage. At the same time, I acknowledged that black, indigenous, and people of color (BIPOC), are often left behind.

In a midpoint reflection, I theorized the problem through the lens of a double bind. On one hand, medicine erases the needs of BIPOC and the harms they experience — the health harms experienced by frontline medical workers, or caused by school and residential segregation — so that they cannot access medical civil rights. On the other hand, BIPOC are rendered hypervisible in contexts where medicine continues to oppress. They are used in clinical trials and tarred with xenophobia and narratives of genetic difference. What should be done?

Several authors offer solutions. I separate them into three categories: (1) community reform, (2) social and legal reform, and (3) medical reform. Of course, all of these solutions are interrelated. Legal and policy change drives medicine; medical research drives law, society, and policy — and both are driven through community activism and consciousness.

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abortion protest outside supreme court.

Reproductive Rights vs. Reproductive Justice: Why the Difference Matters in Bioethics

By Danielle M. Pacia

When conceptualizing the pursuit of reproductive freedom, we must acknowledge the ways that our systems and structures fail Black, Indigenous and people of color (BIPOC) populations.

2020 has been a year filled with anxiety and anger over the COVID-19 pandemic’s disproportionate negative effects on BIPOC populations. Black Lives Matter protests after the unjust deaths of Breonna Taylor, Mia Green, George Floyd, Rayshard Brooks, Riah Milton, and many others whose lives ended far too soon have prompted an overdue awakening. This has caused some to reexamine racism on a personal and institutional level. Like many disciplines in our country, the field of bioethics has begun to recognize how the field reinforces racism within its scholarship.

Part of this effort includes a critical examination of the frameworks we employ when analyzing bioethical subjects and events, and how they may exclude the historical contributions and narratives of BIPOC populations. Merely acknowledging racism is not enough.

Here, I will explain the differences in the terms reproductive justice and reproductive rights and advocate use of the reproductive justice framework instead of the reproductive rights framework. Within bioethics and health law policy, there is often a lack of clarity between the terms, which, in turn, leaves their important conceptual and historical differences ignored.

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Close-up of a stethoscope on an American flag

Why Justice is Good for America’s Health

By Dayna Bowen Matthew

Justice is good for health [and] . . . health is the byproduct of justice.

— Norman Daniels, Bruce Kennedy & Ichiro Kawachi (Boston Review, 2000)

Among the most salient lessons to be learned from the coronavirus pandemic are that unjust laws produce unjust health outcomes, and that justice is just plain good for America’s health.

Health justice is the moral mandate to protect and advance an equal opportunity for all to enjoy greatest health and well-being possible. Health justice means that no one person or group of people are granted or excluded from the means of pursuing health on an inequitable basis. To achieve health justice, societal institutions such as governments and health care providers must act to advance equality, by increasing fairness and decreasing unfairness of their current and historic impacts on populations.

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Protestor holding sign that reads: "we need reform now."

Using Anti-Racist Policy to Promote the Good Governance of Necessities

By Aysha Pamukcu and Angela P. Harris

Multiple crises creating a “wet cement” moment

In the U.S., racism has repeatedly stymied progress toward the good governance of necessities. Anti-racism, therefore, must be at the core of solutions to our present crises.

One of the most powerful applications of anti-racism is through policy. By enacting and enforcing anti-racist policy, we can govern more of life’s necessities as public goods.

Achieving this requires a robust coalition of advocates who are organized, interdisciplinary, and prepared to promote the equitable governance of vital goods. The “civil rights of health” — a partnership of civil rights, public health, and social justice advocates — can help provide the change infrastructure needed for this paradigm shift.

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Up close shot of an orange prison jumpsuit

COVID-19 and Women in the US Criminal Legal System

By Cynthia Golembeski, Carolyn Sufrin, Brie Williams, Precious Bedell, Sherry Glied, Ingrid Binswanger, Donna Hylton, Tyler Winkelman, and Jaimie Meyer

Health and economic inequities exacerbated by the COVID-19 pandemic disproportionately harm women, and particularly women of color, involved in the criminal legal system.

Structural racism, sexism, poverty, substandard healthcare in jails and prisons, and the health effects of incarceration worsen women’s health. The pandemic only compounds these effects. Often overlooked or less visible, incarcerated women are at significantly increased risk of acquiring infectious illness, including COVID-19.

Alternatives to incarceration, and care continuity for chronic health conditions, including substance-use and psychiatric disorders, which disproportionately affect women, are necessary within the current pandemic and beyond.

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