Here are 5 reading opportunities about the rise of American eugenics, the court’s decision, and its damage on American society. There is something for everyone: a few great books, an essay, a legal analysis with ways to think about the case, and book of poems about the state facility where Carrie and Emma Buck were kept.

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Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck V. Bell

by Paul Lombardo

Originally published in 2010, the 2022 update of Three Generations, No Imbeciles chronicles Carrie Bucks tragic life alongside the American foray into eugenics and the role of the legal system.

Lombardo also edited a 2011 academic collection, A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era.

Access via public library or on Bookshop.

In the Letters of an ‘Imbecile,’ the Sham, and Shame, of Eugenics

Essay by Paul Lombardo

“Carrie Buck was forcibly sterilized to keep an ‘idiot’ from breeding. Her letters underscore the depravity of eugenics.”

When I see letters like Carrie’s, I often think about how much we are losing in our digital landscape. Her letters give us a unique view into her life, her values, and her voice in her own history.

Read the essay about Carrie’s letters at Undark.

Thirteen Ways of Looking at Buck v. Bell: Thoughts Occasioned by Paul Lombardo’s “Three Generations, No Imbeciles”

Paper by Michelle Oberman

For those of you who are interested in legal analysis, I like to share Michelle Oberman’s analysis. A Professor of Law at Santa Clara University School of Law, Professor Oberman read Lombardo’s book out of personal interest, and ended up imagining a whole course that could be taught about the case.

Download the paper for free on Santa Clara Law Digital Commons. Citation: Michelle Oberman, Thirteen Ways of Looking at Buck v. Bell: Thoughts Occasioned by Paul Lombardo’s “Three Generations, No Imbeciles” , 59 Legal Educ. 357 (2010)

Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck

by Adam Cohen

Like Lombardo’s book, Imbeciles investigates the history of the American eugenics movement with special attention to the Supreme Court and the Buck v. Bell decision.

I’m not surprised the book was longlisted for the 2016 National Book Award for Nonfiction. It’s an engaging read - effortlessly moving us through complex law with the passion of a storyteller.

Find in your public library or on Bookshop.

The Virginia State Colony for Epileptics and Feebleminded: Poems

by Molly McCully Brown

Published in 2017, Molly McCully Brown’s book of poems inspired by her youth in the shadow of the Virginia State Colony for Epileptics and Feebleminded is as gutting as it is beautiful. After reading so much legal history about eugenics, Brown’s book helped me slow back down, re-centering the people most impacted by the abuse suffered by those secluded from society.

Below is an excerpt from the opening poem:

I am my own kind of damaged there, 
looking out the right hand window. 
Spastic, palsy and off-balance, 
I’m taking crooked notes about this place. 

It is the land where he is buried, the place 
she spent her whole life, the room 
where they made it impossible 
for her to have children. 

It is the colony where he did not learn to read, 
but did paint every single slat of fence 
you see that shade of yellow. 

The place she didn’t want to leave 
when she finally could, 
because she’d lived there fifty years, 
and couldn’t drive a car, or remember 
the outside, or trust anyone 
to touch her gently.

New York Times Critics’ Top Book of 2017

Find it at your public library or on Bookshop.

Yesterday, Robert F. Kennedy, Jr. testified to The Committee on Energy and Commerce, regarding his agency 2027 budget request:

“We went from paying $7 million a year for autism services in Minneapolis to $200 million a year. And most of that was stolen.” (59:38)

“I mean, we have literally dozens and dozens of of programs and initiatives for driving prices down. The biggest one is ending the chronic disease epidemic. In 1960 when my uncle was president, we spent zero on chronic disease in this country. Now we spend about 4.3 trillion a year and it is rising exponentially. So that’s one issue that we that we are addressing for the first time in history. (2:29:52)

“…then cleaning up the risk pool. Cleaning up people who don’t belong on Medicaid or Medicare or in the exchanges. You know, when you do that, you improve the risk pool.” (2:31:23)

Listening to Kennedy’s gravely voice as he described his clear distain for the financial costs associated with people with illnesses who rely on government aid, I couldn’t help but think of the nearly century old landmark Supreme Court case Buck v. Bell.

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Carrie Buck (1906-1983): a teenager, a woman, a mother

If you type “Buck v. Bell” into a search engine, you will easily find quick summaries of the case: a long time ago, a teen mom was diagnosed as feebleminded and institutionalized. The state sought and won the authority to perform surgery on her to prevent her from having any more children. More than 70,000 women, mostly women of color, were sterilized as a result.

But I don’t want to start with the case or its horrid aftermath. I want to start with the person.

I want to start with Carrie Buck - a living woman with inherent human dignity, who was profoundly mistreated by her foster parents, her doctors, and the state of Virginia.

The day before Independence Day in 1906, Carrie Elizabeth was born in Charlottesville, Virginia to Emma Buck. At age 3, Carrie’s was separated from her mother and placed in foster care. Her foster parents removed her from school in sixth grade - not because school was difficult for her - but so that she could provide domestic labor. The foster parents’ nephew, Clarence Garland, raped and impregnated Carrie in 1923. Garland skipped town after the incident rather than keeping his promise to marry her, leaving Carrie alone to deal with the consequences of his rape.

On March 8, 1924, at 17 years old, Carrie gave birth to her only child, a girl. Rather than admit to their nephwe’s rape, Carrie’s foster parents had her diagnosed as “feeble-minded” and “promiscuous” and had her involuntarily committed in the Virginia Colony for Epileptics and Feebleminded. The child was placed in the care of the same foster parents that committed Carrie to the colony. They named her Vivian.

In 1920, Carrie’s own mother Emma had been declared a “low grade moron” and promiscuous for having a child while unmarried. Placed in the same Virginia facility, this was where Emma and Carrie were reunited as mother and daughter. The most famous image of Carrie is sitting by her mother’s side the day before the Supreme Court would hear arguments on Carrie’s sterilization as a condition of her release.

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Roughly three weeks after her sterilization, Carrie was paroled, like any other prisoner, from the Virginia Colony. Rather than being released as a free woman, she was made a ward of the family for whom she worked for as a domestic servant. She was required to write to Dr. Bell and his nurse to prove she did not need to be re-segregated from society. She provided live-in domestic labor to this family until her formal release from the Colony’s oversight in 1930.

Carrie later married a widower and attempted to move on with her life. She never forgot her mother, who remained in the Colony. She attempted to have Emma released from the Colony to her care. Writing to Dr. Bell, “I will see that my mother is well taken care of and plenty to eat if you will let her come. I am real anxious for her to come.”

Vivian, Carrie Buck’s only child, was an honor student when she died at age eight of enterocolitis. She died on Carrie’s 26th birthday, on July 3, 1932.

Her letters, which legal historian Paul Lombardo pieced together from crumbling microfiche, reveal a thoughtful woman, eager to demonstrate that she should remain free. Contrary to the “evidence” provided in the trial, people who knew Carrie denied she had an intellectual disability.1

Carrie Buck v. Dr. John H. Bell

On April 22, 1927, the Supreme Court of the United States heard arguments in Buck v. Bell. Ten days later, the Court upheld Virginia’s sterilization law paving the way for those deemed “unfit” to have their reproductive freedoms with held. The case was a culmination of the eugenic fervor of the time, fueled by scientific racism, Fitter Family and Better Baby Competitions, and the relentless propaganda of films like The Black Stork (later renamed Are You Fit to Marry?).

Harry Laughlin, a leader in the eugenics movement and director of the Eugenics Record Office, drafted a Model Eugenical Sterilization Law that Virginia adopted and enacted on March 20, 1924. The law allowed for the forced sterilization of people segregated in state institutions as a “benefit both to themselves and society.” It was passed on the same day as the Racial Integrity Act of 1924, requiring the Virginia Bureau of Vital Statistics to record every newborn baby and outlawed marriages between “white” and “non-white” people. The sterilization law was meticulously crafted to make negative eugenics (the coercive limiting of reproduction) the preferred method to address “undesirable” people from procreating in order to “purify the white race.”

Laughlin and her physician, Dr. Bell, selected Carrie to be the test case for application of the sterilization law. They wanted the law to be challenged and to wend it’s way to unimpeachable legality. Once won in the Supreme Court, the model law could be adopted throughout the United States.

Doctors and lawyers manipulated evidence, labeling Buck’s mother and infant daughter to fit their narrative. Despite Vivian being a typical seven month old baby, she was administered a test that she supposedly failed - labeling her an “imbecile.” The test that was “failed”? Holding a coin in front of the baby to see if she focused on it.

In his testimony to the court, Laughlin described Carrie and her mother as belonging to the group of “shiftless, ignorant, and worthless class of anti-social whites of the South.” In his estimation, people like Carrie and Emma were not just not the right kind of people, they were literally worthless - so worthless that their family line should be wiped out.

10 days later, on May 2, 1927, the Supreme Court decided in favor of the State of Virginia, allowing for the forced sterilization of individuals deemed “feeble-minded”. The Court ruled that such state-mandated sterilization did not violate the Due Process or Equal Protection Clauses of the Fourteenth Amendment, arguing that such actions protected the “welfare of society.” Only one justice dissented.

Chief Justice Oliver Wendell Holmes notoriously justified this decision by stating that “Three generations of imbeciles are enough.”

One hundred seventy days later on October 19, 1927, Dr. John Bell, superintendent of the colony, ligated Carrie’s fallopian tubes, removed one inch from each tube, and “cauterized the ends with carbolic acid and alcohol.” He was assisted by nurse Roxie Berry.

Indiana was the first state to adopt involuntary sterilization statutes in 1907, followed by California, Connecticut, and Washington. While not the first state to codify this grave reproductive injustice, Virginia’s model law solidified the state’s power to limit citizens’ ability to become parents and build families. The legal path clearly articulated in the Buck case, dozens of states followed with their own sterilization laws. Ultimately, hundreds of thousands of people - mostly poor women of color - were robbed of their fertility. Children as young as 10 years old were sterilized.

Virginia didn’t repeal its law until 1974 and didn’t apologize to victims until 2002.

The Dangerous Economic Ideas in Buck v. Bell

While the Holmes’ quote above is the most famous, it’s not the most chilling aspect of his opinion. As Jasmin E. Harris argues, the long lasting effects of Buck v. Bell lie in three less well-remembered sentences in the short opinion:

“We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.”

Holmes says the lives of many citizens are simply not worth living. By his logic, they are better never to have existed at all.

The flawed arguments made by Laughlin, Holmes, and countless other eugenicists of the era, was that people with disabilities and people of color are an economically wasteful investment. Kennedy’s testimony doesn’t use the terms “undesireable” or “unfit,” but the connection to the century old court case rang out loud and clear when he called to “improve the risk pool”: ensuring access to care for people with disabilities is expensive.

Rather than working to make care more affordable and accessible, RFK Jr wants people removed from government support programs. The only way “cleaning up the risk pools” lowers prices is if those human beings don’t get care. He may explicitly not say he wants those people to suffer and die, but that is the logica consequence of withdrawing government aid for millions of low income Americans. (Please read, Matthew Cortland’s excellent essay on the hearings for more.)

The Legacy of Buck v. Bell

Fifty-six years after her state sanctioned sterilization on January 28, 1983, Carrie Buck Eagle Detamore died at age 76. The last known photo taken of her is from a Christmas pageant at the facility. I wonder if the people who surrounded Carrie at the nursing home reflected on casting her as Mary, Mother of God and Queen of All the Angels. Did they feel it was right and deserved considering the callous injustices she faced early in her life?

Buck v. Bell is a landmark due to its infamy both in America and in Europe. Nazi doctors at the Nuremburg Trials cited the decision in their defense of sterilization “research” and racial purity. The loud calls for eugenics lost their shine in the years following World War II, but the sterilizations continued for decades.

Buck v. Bell has never been overturned. Forced sterilizations haven’t disappeared. The once fervent practice of negative eugenics has fallen out of favor, but scandals related to reproductive coercion have persisted, as evidenced by the treatment of women in both California prisons and immigration detention.

More to Come on Buck v. Bell

Between now and May 2, I’ll share more with you on the eugenic legacy of Buck v. Bell, along with curated lists of books and films to deepen your understanding of this tragic case.

Romy and I walked out to the huddle area clad in our matching costumes to announce the beginning of Unicorn Day to our scrub tech, nursing, and sterile processing colleagues and to thank them for choosing to take care of kids. We wanted to convey both how much they mean to us as individuals, and how their unique skills, attention to detail, and ability to work together is valuable for us to do the stressful and wonderful work that we do: take excellent care of kids having surgery.

This is not a typical scene in a hospital, not even in a childrens hospital. But for four years, my friend Romy and I coordinate our days off so we can throw an absurd, made up party - a Unicorn Day party - honoring our colleagues at work.

And it all started because I was depressed.

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In late 2021, Will Flanary posted an now iconic Dr Glaucomflecken video on how pediatrics is easy. A surgeon tells a medical student that if they want to do something easy, they should consider pediatrics. A pediatrician - always identifiable for wearing a plush glittery unicorn headband - pops through the doorway to ask a series of pointed questions of the surgeon:

“Is it easy when your patients have completely different physiology that changes rapidly as they age?” “Oh! Maybe it’s easy to code a newborn or tell a child they have cancer?” “Do you think it’s easy to do all those things in a healthcare system that values an appendectomy more than treating a teenager with depression?”

The skit ends with the pediatrician offering the surgeon a lollipop “It’ll take your mind off those severe burns.” When I saw the video for the first time, I sobbed in that uncontrollable, snotty way that gives you an emotional hangover. Because it was all true. While pediatric surgical staff, nurses, and faculty aren’t in the exact same situation as general pediatrics folks, we’re in the story of what it means to take care of kids. Surgical arenas carry a specific kinds of life-or-death stress that is hard to shake. Surgery on kids ratchets that up significantly.

By the second half of 2022, I felt like a husk of a person. Two years of COVID work, both as an anesthesiologist and perhaps especially as an ethicist, had left me exhausted and melancholy. I’d born witness to a lot of suffering, morbidity, and death. It wasn’t getting any easier. COVID was overwhelming, still killing more than 2000 people each week. That May, the US death toll alone reached 1 million and the global death toll surpassed 6 million. Insurance companies made money hand over fist. It was clear it would never end, even as I watched the world become increasingly desperate to forget. Russia invaded Ukraine, launching new images of war and especially the harm to children into my social media and news feed. The Dobbs decision was leaked and then finalized. Climate change continues to worsen. Americas pastime of school shootings remained strong - in May a gunman kills 19 students and two teachers in Uvalde, Texas while the police remained outside the school. Gun violence became the leading cause of death among children in 2020, and 2022 was no improvement. Civil rights protests in Iran against morality laws targeting women. I could go on, but suffice to say it was yet another rough year both inside and outside the hospital.

I would drive to work and sit in the car, not wanting to get out. Healthcare workers were resigning in droves. I considered doing the same, but I wasn’t ready to walk away form a profession I love. Despite practicing under the thumb of healthcare capitalism corporate business models that squeeze as much as possible out of workers, insurance that bankrupts families, and insufficient governmental supplementation for children, I still want to lend my hard earned skills to take care of kids.

Since I wasn’t ready to quit, I needed to get my ass out of the car and go give drugs to some children. I thought of Glaucomflecken’s pediatrician, projecting goodness and kindness in the face of childhood illness and our wildly unjust health system.

I needed a bandaid, and no one was going to get it for me.

In an effort to manufacture a little whimsy, I went online and bought a 12 pack of plastic unicorn horn headbands in neon rainbow colors. Since they were washable, I figured they would be acceptable to wear in the OR. One day in the fall I wore one in the OR. Would I look silly? Yes. Was I a little nervous that someone would be mad that I was wearing a headband in the OR? Yes. But they were washable, so it would probably be fine.

When the team in the room asked me why I told them I was in a bad mood and didn’t want to carry it all day. I figured a unicorn headband might take the edge off. I offered them horns and everyone accepted. We had a busy day of tonsillectomies and nodded our unicorn horns together at each procedure Time Out.

Random staff saw me in the hallway and asked where they could get one. I ended up giving away the whole pack, so I bought another. I started wearing them whenever I felt kind of shitty.

@burgartbioethixUnicorn Day is coming back!

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Weeks later, Romy came up to me in the hallway with a bold proposition: everyone here needs this. She wanted to have a full day dedicated to unicorn energy. I thought she was nuts. I thought of how much work it would be to put on an event for the roughly 300 people in our work area. I thought of the cost. I thought it would be a flop. “I don’t know, Romy. You can’t make people have fun.”

But she would not be deterred, “I think we can.”

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The following spring we held our first Unicorn Day at the hospital. We made it a surprise. Other than asking for access to a small patient room we occasionally use for going away parties, we didn’t tell anyone what we were up to. We showed up at the booty crack of dawn with donuts and cupcakes, enough unicorn horns for the staff, and thanked each person for their service caring for children having surgeries, procedures, and MRIs.

@burgartbioethixUnicorn Day 2024 - celebrating our OR/Radiology colleagues! #anesthesialife #surgerytiktok #operatingroom #nursesoftiktok #scrubs

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I assumed it would be be a one off event, but staff kept coming up to us months afterwards and asking when the next one would be.

So we kept doing it.

When people in the regular world ask what I do for a living, their typical responses range from “that sounds sad” to “I could never do that” to disbelief that children can need things like brain surgery, chemotherapy, and transplants.

This is what makes people who work in pediatric operating rooms unique. Not everyone in healthcare chooses to take care of kids having surgery. But our colleagues do. I don’t want a day to go by where they don’t know the skills they bring to work make a difference, that this remains meaningful work.

This year, Romy and I hosted the 4th Annual Unicorn Day. From the beginning, we made a point of being inclusive - it’s not an event just to celebrate anesthesiologists. There are national celebrations of our various specialities, but they always feel a little flat, a little (or a lot) corporate.

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Each year, a new group of people join in. Our boss volunteered to cover the cost and has continued each year to be supportive. The nurse managers started pitching in - helping with organization and showing up in their own themed get-ups. Our brilliant admins in the office helped us get the supplies ordered and into one box for us to schlep across the street to the hospital. Other anesthesiologists showed up at 6:30am to help with set up before checking in their first patients, one of the dedicated pre-op nurses brought in extra unicorn themed items for the patients. Surgeons pitched in to buy pizza. I think the difference between the Unicorn Day we’ve built and a corporate wellness initiative is that we make it for each other.

Unicorn Day pizza isn’t Corporate Wellness Pizza - it’s a meal your colleagues made sure you could have between your cases. The donuts, the cake, and the temporary tattoos are from people who genuinely respect you. And all of it is permission to be joyful and silly even though the world is on fire and everything sucks and we can’t control it.

Unicorn Day is for all of us and by us. It’s for the work we do together, the work it would be impossible to do on our own. Unicorn Day is now a tradition that feels well-established, and we seem to have reached some sort of communal inflection point. My friend Jewel refers to it as the “new high holy day” of our little corner of the hospital.

The unicorn onesie periodically comes in handy. In 2025, I wore my onesie to a lecture with Will Flanary, aka Dr. Glaucomflecken, and had a chance to tell him what we had been building in pediatric surgical care, inspired by his representation of pediatricians. I gave him an OR approved unicorn horn to supplement his plush supply.

Today is International Unicorn Day. If you can, tell someone you work with that they matter to you, that you appreciate them. Life if short and the world is kind of fucked. Unicorn energy won’t change that, but it might give you and your people a little glittery boost to make it through today and figure out tomorrow.

Unicorn love forever. 🦄

On December 9, 2025, she will give a public lecture at the University of Pennsylvania on the legacy of her work.

What Makes Clinical Research Ethical?: A Twenty-Five Year Journey and Look to the Future

Speaker: Christine Grady, MSN, PhD

Former Chair, Department of Bioethics, NIH Clinical Center

Recognizing some uncertainty about the ethics of clinical research and differences in interpretation and implementation of existing guidance, 25 years ago, Dr. Grady and colleagues developed a framework to help investigators, reviewers, and interested others design, implement, and evaluate ethical clinical research. The framework, consisting initially of seven (and later eight principles), resonated with many around the globe.

In 2000, the NIH Clinical Center researchers published seven main principles to guide the conduct of ethical research:

• Social and clinical value

• Scientific validity

• Fair subject selection

• Favorable risk-benefit ratio

• Independent review

• Informed consent

• Respect for potential and enrolled subjects

Since then, the framework has been used, debated, and cited in academic publications, national guidelines, presentations, and discussions across a wide spectrum of clinical research. In this presentation, Dr. Grady will discuss the origins of the framework, its contents and elements, how it has been used, some challenges, and where more work could be useful.

Dr. Grady has published widely in the biomedical and bioethics literature and authored or edited several books, including The Oxford Textbook of Clinical Research Ethics. Her work is known internationally, and she has lectured widely on ethical issues in clinical research and clinical care, HIV disease, and nursing.

Read more on ELSIHub.

• Where: UPenn Medical Ethics and Health Policy

• When: December 9, 2025

• How: Register to attend virtually

• Cost: Free

Elaine tries to get a new doctor who doesn’t think she’s difficult, but realizes that her chart has followed her to the next physician. It becomes clear she will never escape this label.

It’s in her permanent record.

Elaine is not alone.

Physicians’ use of stigmatizing language is a known and long-standing problem. Anti-fatness and bias against people with substance use disorders are rampant in medical records. A Reddit thread for people with a bipolar diagnosis is full of rants about the language used to describe them in their charts.

To better understand this issue, it’s helpful to know a little about the evolution of medical records and who can see what doctors write.

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History of the Electronic Medical Record

The first electronic medical records (EMR) emerged in the 1960s with the Mayo Clinic in Rochester, Minnesota aiming to move away from the giant amounts of paper needed for medical records. The birth of EMRs of today came out of the Regenstrief Institute in Indianapolis in 1972. However, the physical space and cost of computing in these early years were so high that adoption remained low. In 1991, the Institute of Medicine recommended that all physician offices switch to computerized records by 2000.

My first job at Cedars-Sinai Medical Center in the early 2000s had me navigating a combination of electronic records (the hospital was determined to make their own system) and giant binders of patient information. I remember one physician’s “notes” were little more than squiggly lines.

Eventually, cloud-based EMR systems emerged, significantly reducing costs. By the time I entered medical school in 2006, out-of-the-box cloud-based EMRs like Epic and Cerner were gaining traction. The Veterans Administration Hospitals used a homegrown system - Computerized Provider Record System (CPRS), the EHR component of VistA (Veterans Health Information Systems and Technology Architecture). In 2009, the passage of the American Recovery and Reinvestment Act (ARRA) incentivized EMR adoption through the Meaningful Use program.

The adoption of these electronic records - making it easier for colleagues and lawyers to review medical records - drove changes in the stigmatizing language used, but didn’t eliminate it.

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Even with widespread adoption of electronic medical records, patients didn’t have easy access to their information. While online patient-facing portals would reveal lab values, radiology reports, and after-visit summaries, these were not available in real time. A doctor or nurse had to choose to release that information to patients - usually after it had been discussed in person or over the phone. As a patient, it was unlikely to ever see medical notes unless you snuck a peek like Elaine, or you went through the arduous process of making a formal request from the hospital or clinic’s medical records office. There were fees for getting copies of these records.

Open Notes Movement

In 2012, an exploratory study had 105 primary care doctors invite 20,000 of their patients to read their notes via secure online portals. The study found that patients loved having access. While some patients had increased worries and felt confused by the notes, most participants experienced no negative impacts and felt more empowered. Doctors noted that access for patients did not increase their workload.

The Open Notes movement was born out of this study, driving research and policy to increase access to medical records. The passage of the 21st Century Cures Act in 2016 put a timeline in place for hospital systems to implement free, easy access data sharing with patients.

As of April 5, 2021, all U.S. healthcare systems are required to electronically share clinicians’ visit notes and other health data with patients at no charge.

While the movement had been growing, the implementation of shared notes surprised and worried many clinicians. Various specialists thought they were exceptional and that their notes shouldn’t be released. Some specialists felt their notes were exceptionally more difficult to understand or more technical than other specialties. Many anesthesiologists expressed concern that our records would be too challenging for patients to understand, and worried about the timing of records release relevant to delivering an anesthetic. My friends and I wrote an article for our peers addressing these concerns and how to move past them.

Physician Anxiety and the Need for Self-reflection on Language

Many physicians had (and still have) anxiety about open notes.

While lots of physicians cited technical knowledge gaps between doctors and patients, I think that much of the concern stemmed from an underlying fear of being criticized for the ways that we write about patients.

Patients can now read exactly what we write, meaning that physicians have needed to do a great deal more self-reflection on why we write what we write and how it may be received by the various people and entities who access the note. The medical record was never designed for patients to read. Notes are used to communicate with other healthcare providers, to code for insurance billing, track quality metrics, and now also reviewed by patients.

Even when we write things in a technically medically correct way, we have rating scales and mnemonics that may sound shocking, crass, or unkind to those not indoctrinated into medical culture. While the phrase “difficult patient” has fallen out of favor, I’ve seen alternative euphemistic judgments creep into the record with the same flavor. To be labeled as “non-compliant” or “non-adherent” can completely flatten the system-level factors that make it hard to follow certain medical advice.

Our Health Data Isn’t Secure Enough

Even for physicians who document with care and center patient dignity, legal gaps in the privacy of medical records pose increasing risks in today’s political environment. HIPAA, the U.S.’s health information privacy law, allows for certain data to be disclosed to law enforcement. With so many states using medical practice as a lever to prevent patient access to healthcare, the medical record can lead to serious consequences for patients and physicians. From abortion to gender-affirming care to immigration status, the medical record can be used to cause harm.

Abortion Patient Data

Anti-abortion activist Judge Matthew Kacsmaryk struck down Biden-era enhanced privacy protections for abortion patients, which shielded patients’ abortion records. I’ve written before about how healthcare workers are a major source of reports to law enforcement of self-managed abortions. In August, the Tennessee attorney general subpoenaed abortion records from four area hospitals in a lawsuit about the state’s near-total abortion ban.

Gender Affirming Care Patient Data

Multiple arms of the government have come to attack access to gender-affirming care. Dr. Oz sent a threatening letter to hospitals, putting them on notice that any attempt to bill Medicare for care related to gender-affirming care would be scrutinized. This is paired with the FBI launching a hotline to report physicians who aim to provide any gender-affirming care to patients.

The federal government is attempting to subpoena transgender children’s records from at least 20 major children’s hospitals. The subpoenas demand access to medical records, hospital and clinic documents, and text messages related to gender–affirming care. You can read the subpoena Children’s Hospital of Philadelphia received here. Thankfully, U.S. District Judge Myong Joun blocked the attempt on Boston Children’s Hospital on September 10.

Immigrant Patient Data

The recent escalation of immigration raids has increased the risks of undocumented patients. Clinicians must be extremely careful in navigating the needs of patients in the face of increasing attempts at medical record surveillance.

Dr. Mara Gordon and I will discuss these issues and more this Friday!

This Friday, I’ll chat with Your Doctor Friend, , about how the medical record can lead to patient harm - and what we can do about it.

I hope to see you there live on Oct 3, 2025 at 10am PT/1pm ET.

Click here on Oct 3 to join us live!

*Unfortunately, my internet was a bit buggy (thanks, Silicon Valley!), so the video quality on my end is a bit sus.

Mary is on tour with this fabulous book, and you can see her in a city near you! If you can make it to any of these, I highly recommend it. Mary is funny and fun, interested and interesting!

Thank you , , and many others for tuning into my live video with ! Join me for my next live video in the app.

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Rockefellers, Root Canals, and “Race Records”

The Toothache Blues and the Story of Dentistry Reform in Interwar Harlem

Bronwen McVeigh, a post-doctoral fellow at the University College Dublin, currently uses her PhD in Historical Musicology to study the blues in relation to endemic illness, dental hygiene, public health campaigns, and political fractures within and beyond African American communities in interwar America.

• Sponsor: National Collaborative on Humanities & Ethics in Dentistry (NCHED)

• Speaker: Bronwen McVeigh, PhD

• Date: September 30, 2025

• Time: 10 AM (PT)/11 AM (MST)/12 PM (CT)/1 PM (ET)

• Location: ZOOM

• Register: Here

• Continuing Education Credits: Available for dental professionals

LEARNING OBJECTIVES

1. Analyze blues narratives alongside materials from Harlem-based public health campaigns to uncover themes of alienation and access barriers within dentistry.

2. Foster critical thinking about how artistic expressions like blues can serve as visceral records of community experience, deepening our understanding of the triumphs and failures of campaigns aiming to improve dental hygiene among lower-income African American communities in interwar Harlem.

3. Better understand ongoing challenges in broadening healthcare access and achieving patient trust by examining understudied historical primary source materials.

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When Care Comes First

A Radical Reimagining of Medical Ethics

35th Annual Jonathan J. King Lecture at Stanford University

Arthur Kleinman, MD, author of the acclaimed The Illness Narratives: Suffering, Healing, and the Human Condition, is a world-renowned expert and luminary whose influential career spans anthropology, global health, ethics, psychiatry, and narrative and cultural medicine.

In this timely and thought-provoking lecture, Dr. Kleinman will explore the moral dimensions of caregiving and propose a transformative vision for the future of ethical medical practice.

Educated at Stanford and a distinguished professor at Harvard for nearly five decades, Kleinman has notably served as Chair of both Harvard’s Department of Social Medicine and Department of Anthropology and directed Harvard’s Asia Center.

He is also the author of multiple books, including The Soul of Care, and co-editor of seminal volumes such as Reimagining Global Health. Kleinman's prestigious accolades include membership in the National Academy of Medicine, a Guggenheim Fellowship, and the Franz Boas Award from the American Anthropological Association. A revered mentor, Kleinman has guided generations of scholars in transforming global perspectives on health and human suffering.

• Sponsor: The King Lectureship at Stanford Center for Biomedical Ethics

• Speaker: Arthur Kleinman, MD

• Date: Tuesday, October 14, 2025

• Time: 5:30 PM (PT)/ 6:30 PM (MST)/7:30 PM (CT)/8:30 PM (ET)

• Location: Hybrid - Stanford Faculty Club and Zoom

• Register:

  • Virtual registration (Hors d’oeuvres reception will follow the lecture)

  • In-person registration

You can learn more about Jonathan King and his legacy on the King Lectureship page.

Can prosthetic legs be better?

How does one build a new vagina or penis from other human tissue?

Human body parts can become damaged or stop working altogether. Patients, clinicians, and scientists continue to explore the possibilities of transplantation, joint replacements, prostheses, and more.

Join a live conversation with Mary Roach on September 10, 2025 at Noon PT

I'm thrilled to chat tomorrow with the incomparable Mary Roach about her new book Replaceable You: Adventures in Human Anatomy!

I’ve loved her previous work from Stiff (curious about what happens to dead bodies?), Bonk (the nitty gritty science of sex), and Fuzz (did you know people sue wildlife?).

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Mary takes us on a journey from failed starts to discovery in replacing human body parts in this hilarious and heartfelt book about the human body.

Join us on September 10 from noon-1 pm Pacific Time on the Substack app.

Join the Live Recording with Mary Roach

Mary Roach’s Replaceable You will be released on September 16, 2025.

You can pre-order your copy here.

“Creativity is not frivolous; it’s the muscle that lets us imagine a different future when the system tells us there’s no alternative.”

I’m so excited to share this conversation with the founders of Introspective Spaces, pediatrician Anu Gorukanti and public health nurse Laura Holford. In this episode, they share information and insights about their program, Artist’s Way for Healthcare Workers, as much as I did.

Introspective Spaces’ mission is to create contemplative community spaces to support healthcare workers with:

1. Deconstructing and processing moral distress as spiritual injury

2. Creating space for healthcare workers to reconnect with themselves and each other

3. Reimagining a new way in healthcare

Laura and Anu’s program uses Julia Cameron’s book The Artist’s Way: A Spiritual Path to Higher Creativity to build cohorts of healthcare workers for a 12-week program to rediscover their connection to creativity. We have a lot of agency as individuals, but healing most often happens in community. Anu and Laura are helping build those connections across professions and time zones through these supportive, private groups.

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Who is this Artist’s Way program for?

This program is open to all healthcare workers and mental health professionals who engage directly or indirectly with our health system and are looking to build community. This season, they are also offering both a national drop-in option and a cohort focused on healthcare workers who are pregnant, postpartum, or new parents.

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How can you sign up? What supplies do you need?

Sign up for the Artist’s Way for Healthcare Workers at the Introspective Spaces website. Pricing is on a sliding scale and includes continuing education credits. Scholarships are available. Sign-ups for this cohort close on Monday, August 25, 2025, and cohorts begin in early September!

You can get Julia Cameron’s book here: Artist’s Way for Healthcare Workers

How can you learn more about Introspective Spaces?

In addition to their community programming, they have a beautiful Substack newsletter, also called . Here’s one of their recent publications:

Introspective Spaces

How Grief Rituals Can Help Healthcare Workers Heal

“Do you want to stay in the room? The priest is coming by to do a blessing.” I nodded my head as I fought back tears and stepped back into the corner of the hospital room. I had come into work on my day off from pediatrics residency to see my patient Catrina before she passed away…

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9 months ago · 2 likes · Introspective Spaces

Thank you to those who joined us live!

Thank you , , , , and many others for tuning into this live video with and Laura H from ! Join me for my next live video in the app.

Get more from Alyssa Burgart, MD, MA in the Substack app

Available for iOS and Android

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He shares the pivotal stories that inspired his work, including helping launch Loyola as the first U.S. medical school to openly admit DACA students. Together, Alyssa and Mark tackle the current climate of immigration enforcement, hospital overcompliance with ICE, and the moral obligations of healthcare professionals to protect vulnerable patients.

If you’ve ever wondered what healthcare can and should do to shield patients from fear and injustice, this episode is for you.

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I encourage you to check out and share these resources:

• The Loyola University Chicago Sanctuary Doctoring Toolkit, available in Spanish and English.

• Good Sanctuary Doctoring for Undocumented Patients by Drs. Kuczewski, Johana Mejias-Beck, and Amy Blair.

Additional Resources and References

Department of Homeland Security Sensitive Locations Memo

• DHS rescinded protections in sensitive areas: churches, schools, and hospitals.

American Immigration Lawyers Association (AILA)

• Immigrants are at risk of being scammed for fake legal services. This organization pairs people with vetted immigration attorneys.

National Immigration Law Center

• Factsheet: Trump’s Rescission of Protected Areas Policies Undermines Safety for All

American Academy of Pediatrics (AAP)

• AAP calls for end of family detention

• AAP Guide to Immigrant Child Health

• Detention of Immigrant Children

Catholic organizations, including Catholic Health Association of the U.S., U.S. Conference of Catholic Bishops, and Catholic Charities speak out against ICE in hospitals

• Noted for being one of the only organizations to speak out after the rescinding of the Sensitive Locations Memo. You can read the organization’s letter to the House and Senate here.

• CCUSA, USCCB, CHA emphasize need for protected areas for immigration enforcement

Reagan’s 1986 Amnesty Act - Immigration Reform and Control Act (IRCA)

DACA (Deferred Action for Childhood Arrivals)

• Stritch pioneers the education of DACA physicians-in-training

AMA Code of Ethics

• Principle III of the code states: “III. A physician shall respect the law and also recognize a responsibility to seek changes in those requirements which are contrary to the best interests of the patient.”

• Despite the AMA speaking out against ICE patrolling in hospitals back in 2017, the organization has remained silent in 2025.

UN Convention on the Rights of the Child

• Part 1, Article 9: “States Parties shall ensure that a child shall not be separated from his or her parents against their will, except” in rare circumstances where “such separation is necessary for the best interests of the child.”

Low Crime Rates Among Immigrants

• Debunking the Myth of the ‘Migrant Crime Wave’

Child Labor Law Rollbacks

• Despite hazardous working conditions, many states are rolling back child labor laws

• 2022 US Department of Labor statement on child labor protections

• Economic Policy Institute: Child labor laws are under attack in states across the country

Healthcare workers as a source of patient criminalization

• A 2022 study by If/How/When indicated that healthcare workers were the most likely to report patients after self-managed abortions.

Disease Outbreaks in Detention Facilities

• Mass incarceration leads to serious individual and public health consequences.

• Seven suspected tuberculosis cases at Tacoma ICE processing facility

• Man Held by ICE Was Jailed in Alaska for Weeks. Now He's in the Hospital Battling Tuberculosis

Thank you , , , , and many others for tuning into my live video with ! Join me for my next live video in the app.

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Get more from Alyssa Burgart, MD, MA in the Substack app

Available for iOS and Android

Get the app

Participating in an execution is a clear violation of the American Medical Association Code of Ethics. The code specifically calls out any treatment that would “contribute to the ability of another individual to directly cause the death of the condemned.”

Tennessee’s Plan to Execute Byron Black Despite Cardiac Device

Unfortunately, on Thursday, August 1, 2025, the Tennessee Supreme Court overruled a lower court that required the device to be turned off prior to execution. The court stated that delaying the execution due to an inability to get Black’s device deactivated amounts to a “stay of execution” that they didn’t have the authority to authorize. The irony of this argument, when Black was sentenced to death in 1988, is not lost on me.

This is legal mumbo jumbo to facilitate state-sanctioned killing by lethal injection. In Black’s case, as he dies, his device will do what it has been designed to do and attempt to shock his heart back into a regular rhythm. We should expect that he will be shocked multiple times during the execution. Not only will these shocks be extremely painful, they will likely also make his death last longer than if the device were turned off.

In America, approximately 150,000 automated implantable cardioverter-defibrillators (AICDs, or ICDs) are placed each year, both to prevent and treat fatal cardiac arrhythmias.

By preventing sudden cardiac death, ICDs keep patients alive longer than they would live otherwise. However, being shocked is incredibly unpleasant. For some patients, it’s extremely painful and stressful. Many such patients develop anxiety disorders, panic attacks, and PTSD related specifically to the risk of enduring another shock.

Tennessee Executions on Hold 2022-2025

In 2022, thirty minutes before the execution of Oscar Smith, the governor stopped the execution and put remaining executions on hold due to the facility’s failure to test the chemicals for bacterial endotoxins. (So we have evidence the TDOC doesn’t care about basic drug management.) He then opened a third-party investigation. Due to lawsuits related to Tennessee’s previous three-drug execution protocol and the internal review, the state moved to a single-drug protocol using only pentobarbital.

The state began executing prisoners in May of this year, beginning with Mr. Smith.

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Pentobarbital and Pulmonary Edema

Thiopental used to be a commonly used drug in the ICU for sedating critically ill patients. Increasingly, companies were not willing to sell the barbiturate to prisons for executions, and by 2017, pentobarbital was nearly impossible to access. In 2011, the European manufacturers of thiopental began refusing to sell it in the US because of its diversion for executions. After its introduction in 2010, pentobarbital became the single drug most commonly used in executions. States moved to using combinations of drugs resembling anesthetics - high doses of sedatives (such as midazolam) and paralyzing medications (such as pancuronium or vecuronium bromide - used commonly in surgery to temporarily ensure muscle movement doesn’t negatively impact surgery). The third drug used was potassium chloride. In proper doses, potassium can be used to correct metabolic imbalances. It is an extremely high-risk medication because, at high doses, one can rather easily put a patient into cardiac arrest1.

However, the ability to procure pentobarbital for executions has increased, and states like Tennessee are using it again. A 2020 review of the autopsies of executed individuals by lethal injection revealed that death by pentobarbital was likely not as “humane” as legislators and death penalty advocates claim. When anesthesiologist Dr. Zivot was asked to review the levels of sedative to determine if the executed man was likely to have been conscious as he died, he noticed something else - the lungs were far too heavy.

The review showed that prisoners had suffered massive pulmonary edema - a known complication of pentobarbital toxicity. The exact way that pentobarbital causes non-cardiogenic pulmonary edema isn’t known, but it is suspected to be due to increased permeability of the alveolar-capillary membrane. More permeability means more fluid can leave the body’s tissues and enter the air sacs of the lungs. This fluid in the lungs has weight, showing that at death, these executed people had lungs weighing approximately two times more than a typical lung.

Pulmonary edema is very unpleasant - many patients with heart failure learn to recognize the signs of chest discomfort and breathlessness.

Cruel and Unusual: ICD Shocks During Execution

Incarcerated people deserve healthcare - just like everyone else. There is a weird and cruel irony in Mr. Black’s case that in receiving common cardiac care for his heart condition, that his execution will likely be even more cruel and unusual. There are people in the government who would prefer money not be spent preventing and treating the illnesses and ailments of incarcerated people. After all, executions are profoundly expensive. The Tennessee Department of Corrections (TDOC) spent around $600,000 on lethal injection drugs since 2017. During this time period, two people were executed by lethal injection. If the state cares about basic drug safety issues, I expect most, if not all, of these drugs have expired or will very soon.

With his heart potentially beating longer than expected due to being shocked back into rhythm, I suspect Mr. Black will be at even greater risk of not only developing pulmonary edema, but also remaining conscious of the experience of both being shocked and drowning in his own edema.

The False Justice of Executions

My categorical opposition to the death penalty is too multifaceted to spell out here. But at its core, the idea that the state should use state power to kill people who committed heinous crimes makes no sense. Black did terrible things, murdering his girlfriend and her two young children. His death will not change that. His death will not make anyone safer.

Execution is already absurdly unethical. To move forward with an execution despite knowing that Black is likely to be continuously shocked as he dies is especially cruel.

Yet, the current president released an Executive Order shortly after taking office, promising to increase the use of the death penalty and to penalize judges and activists who attempt to prevent it.

For me, it’s terrible to imagine what it must be like to die by execution. I know what it’s like to hold a syringe and inject medications that sedate. Even more terrible to imagine the use of drugs that have medical uses to be used to kill someone, and worse yet with the risks of cardiac shocks and pulmonary edema. I encourage us all to do the imagining, especially now, as Mr. Black, a human being, is poised to be killed by the state. If we are unwilling to imagine the horrors of execution, we cannot be ready to imagine a better world where we do not resort to such inhumane acts.

As of a few minutes before I post this, Governor Bill Lee has refused to intervene to stop Black’s death. He will be executed tomorrow at 10 am.

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Physicians refused to travel to the prison to turn off the device.

The backup plan? To transfer Brown to Nashville General Hospital to have it turned off there. Then transfer Brown back to the prison for his execution.

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A Doctor’s Code of Ethics

On the issue of capital punishment, the American Medical Association Code of Ethics states:1

Debate over capital punishment has occurred for centuries and remains a volatile social, political, and legal issue. An individual’s opinion on capital punishment is the personal moral decision of the individual. However, as a member of a profession dedicated to preserving life when there is hope of doing so, a physician must not participate in a legally authorized execution.

Physician participation in execution is defined as actions that fall into one or more of the following categories:

1. Would directly cause the death of the condemned.

2. Would assist, supervise, or contribute to the ability of another individual to directly cause the death of the condemned.

3. Could automatically cause an execution to be carried out on a condemned prisoner.

Tennessee Medical Ethics Defense Act

I wrote earlier this week about the Tennessee Medical Ethics Defense Act and how a physician used their right to conscientiously object to care to refuse prenatal care to an unmarried patient. In that case, the physician put their beliefs over the needs of the patient.

Brown’s case provides an interesting and important use for this Act. Will physicians at Nashville General Hospital follow their ethical duty, as laid out by the AMA, to refuse to participate in state-sanctioned killing? Rather than jeopardizing Brown’s autonomy and access to healthcare, the physicians and hospital could use the law to object on moral and ethical grounds to the state execution.

People who are incarcerated are uniquely vulnerable to medical coercion, manipulation, and other dismissals of their autonomy. These people have rights.

Judges can write orders, but they can’t practice medicine. Following the judge’s order to turn off the implanted cardiac device violates the AMA Code of Ethics and the rights of incarcerated people to make their own health decisions. I will assume with my whole chest that Mr. Brown will not make an informed decision that involves helping the state execute him.

Ascension Saint Thomas Hospital - a Catholic hospital only 1.1 miles away from Nashville General - would never be willing to participate in this scheme on their property. They would use their doctrine and massive protections under both Federal Law and the Medical Ethics Defense Act to object. And no one would be surprised. As I’ve said concerning reporting on conscientious objection in reproductive care, there is an underlying assumption that people who object (the subtext is that these are all religious people) are inherently more ethical than non-objectors (often assumed to be secular and therefore unethical). Except now that the state wants to do something inherently unethical, they will attempt to rely on physicians at a secular facility.

To learn more about the rights of incarcerated patients, consider reading this essay I wrote back in 2023.

Back in the March 6, 2025, I saw so-called Medical Ethics Defense Act went into effect into effect in Tennessee. As an ethicist, the co-optation of the language of medical ethics specifically by conservative groups is frustrating. Bioethicists are often criticized for being largely liberal, so the conservative legal groups pushing laws like these, attempt to claim their ethical beliefs as the only ones that matter. No doubt, many Tennesseans who saw headlines about the Medical Ethics Defense Act assumed it was something that would protect them, rather than threaten their access to care.

What Is the Medical Ethics Defense Act?

While the Act is couched in the broad language of medical ethics, it focuses on a very niche issue called conscientious objection (also called conscience-based refusals). Since shortly after abortion was legalized with Roe, conscience claims by healthcare workers have been protected under a host of federal laws. Most states have at least one law that protects the conscience claims of healthcare workers, allowing them to refuse to participate in specific aspects of care that violate their core beliefs,

The Tennessee conscientious objection law was written with the assistance of far-right Christian legal advocacy and training group Alliance Defending Freedom (ADF). ADF Senior Counsel Greg Chafuen celebrated the law, claiming it would prevent doctors and nurses from being “targeted for caring for their patients by refraining from harmful and dangerous procedures.”

As a physician who cares for patients and refrains from harming my patients, I find this framing outrageous. Conscientious objection laws are not about protecting patients from harm. In fact, these laws always pose a potential risk to patient safety. When misapplied, patients’ care can be delayed or denied. The federal Emergency Medical Treatment and Labor Act (EMTALA) is all that stands between a clinicians’ religious beliefs and the ability to deny care in a life-threatening situation.

Why Conscience Laws Are Not Patient Protection Laws

The purpose of conscience laws is to protect clinicians from severe moral harms due to acting in ways that contradict their religious, moral, or ethical beliefs - ones that would cause them genuine moral injury. But these are treatments that are both legal and that other clinicians do not object to supporting, offering, referring, or providing. Claiming conscientious objection is to prevent unsafe care is a misapplication of the principles meant to protect clinicians at the expense of patients’s access to otherwise available care.

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From Abortion to Anything: Expanding the Boundaries of Refusal

In the ethics community, conscientious objection proponents often assert that cases like the one in Tennessee will never happen. The assumption being that physicians with strong ethical beliefs would only ever use the power to object to provide care under a very narrow set of circumstances. The assumption is that people who utilize conscientious objection are so highly ethical that they would never use such a law to discriminate against a patient. What’s obvious to anyone who deeply questions these laws, is that when a clinician believes their religious beliefs supersede the healthcare needs of patients, this can fuel discrimination.

Tennessee Representative G.A. Hardaway recognized this issue before the bill was passed. In speaking with Nashville Public Radio back in April, he said:

In this case, an obstetrician whose regular practice is to provide prenatal care to patients, has refused to provide care to this specific patient because she does not share their beliefs about marriage. Federal conscientious objection laws were created to protect clinicians and hospitals who refused to participate in abortion and sterilization. The Tennessee law shows how the government has moved towards conscientious absolutism - categorically protecting physicians and nurses who deny patients any care they see fit, based on nothing more than an unshared belief.

For obstetrics practices, if the patient in this news story were to present to a local hospital to deliver and this physician happens to be on-call to deliver babies, then this clinician would be legally obligated to care for the patient regardless of her marital status. But why would this patient ever trust this clinician to ensure she gets access to high-quality care? I wouldn’t.

This means patients will suffer harms from delayed or denied treatment from their healthcare providers related to almost any belief the clinician claims is firmly held. This further burdens patients to not only find a new clinicians who give them appropriate care, they will also would be forced to prove they had been discriminated against in order to seek any legal remedy.

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Tennessee Medical Ethics Defense Act (Senate Bill 955/Public Chapter 955)

The Act is broken into three sections on protections (Conscience protections for healthcare workers, whistleblower protections, free speech protections) and one on legal remedy for healthcare workers and organizations that make conscience claims.

Here’s a summary:

Conscience Protections for Healthcare Providers

• Healthcare providers cannot be forced to participate in or pay for procedures, treatments, or services that go against their conscience.

• The law defines "Conscience" for individuals and institutions:

  • Individuals: the sincerely held ethical, moral, or religious beliefs or

    principles held by a healthcare provider

  • Institutional entities or corporate bodies: conscience is determined by reference to that entity's or body's governing documents, including ethical, moral, or religious guidelines, directives, mission statements, constitutions, articles of incorporation, bylaws, policies, or regulations

• This right:

  • Applies only to specific procedures—not a blanket exemption from all care.

  • Doesn’t override existing contractual obligations (e.g., an insurance company still has to pay for services it agreed to cover).

  • Doesn’t protect providers from lawsuits, criminal charges, or discrimination unless it directly relates to their refusal based on conscience.

• Exceptions:

  • Federal laws still apply (like EMTALA, which requires emergency care).

  • Religious hospitals and clinics can make employment and staffing decisions based on their beliefs—but only if they openly identify as religious and have internal policies to back that up.

  • Amendment: These conscience protections do not apply when a patient is in imminent danger of harming themselves or others.

Whistleblower Protections

• Healthcare providers are protected from punishment if they:

  • Report a violation of this law to supervisors, government agencies, or relevant oversight bodies.

  • Testify, assist, or participate in investigations related to violations of this law.

• Providers also can't be punished for disclosing information they reasonably believe shows:

  • A law or ethical rule was broken.

  • Patient care is being mismanaged or endangered.

  • There is a serious public health or safety threat.

Free Speech Protections

• State or local governments cannot punish healthcare providers for expressing personal beliefs or opinions, unless:

  • Their speech directly caused physical harm to a patient they treated in the past three years.

• Licensing boards or state agencies can’t deny or revoke certification just because a provider exercised First Amendment rights, as long as they weren’t giving specific medical advice to a patient.

• Amendment: These speech protections now apply to all levels of state government, including individual officials acting in their official roles.

Legal Remedies for Healthcare Workers

• If a provider’s rights under this law are violated, they can sue in court.

• If the court finds a violation, the provider can receive:

  • A court order to stop the violation (injunctive relief),

  • An official declaration that their rights were violated (declaratory relief),

  • Financial damages, attorney fees, and court costs.

• A healthcare provider cannot be penalized just because their refusal to participate in a service causes difficulty or cost to others.

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What the Tennessee Law Doesn’t Do

The Medical Ethics Defense Act puts very few guardrails around what would be considered a conscience claim. The definition of conscience requires no reasonableness standard, meaning any deeply held belief could be covered.

No Patient Protections

The only discrimination this Act is concerned with is against healthcare workers who deny care. It offers no concerns or remedies for patients who are denied care, even if based in clear discrimination. The Act does not offer any remedy to patients. It assumes that the only violations of the bill will be by employers, not that a person making a conscience claim may apply the law in ways that lead to patient harm.

No Obligation to Give Accurate Information or to Refer

Not only is there no requirement to refer a patient to a provider willing to provide the legally available care, the law specifically defines “participation” to include any aspect of care that might be construed as facilitating the patient getting the care they need. There is no obligation to refer patients for care elsewhere.

The Law Undermines Informed Consent

The Act does not require the clinician to even disclose their objection to providing certain care. Clinicians have no obligation under the law to be honest with patients about their practice and the limitations they will impose on their patients. This means clinicians have no obligation to provide patients with the range of medically safe options for diagnosis and treatment. Clinicians can freely omit any treatments they personally object to. Clinicians will be able to legally withhold vital information - making it impossible for patients to make informed consent choices.

No Referral, No Disclosure: Barriers to Ethical Care

This leaves patients like the one in Wells’ reporting forced to fend for themselves in an already overly complex and burdensome healthcare environment. A patient who is referred to a clinician with an objection are then forced to get another referral to a different physician. If the referring physician has their own objection - which they don’t have to disclose - they may refuse to refer a patient to a willing provider. In a healthcare system where referrals are based on relationships, it’s not far fetched to see this happening - where only far-right Christian clinicians refer to each other, effectively preventing patients from accessing otherwise ethical and legally protected care.

Why This Law Threatens Trust in Healthcare

Laws like the Medical Ethics Defense Act undermine the trust between patients and clinicians. This relationship is already fragile. Codifying unfettered ways for clinicians to avoid informing patients of their healthcare options and refusing to refer to clinicians who are willing to provide regular medical care, this law give healthcare workers an outrageous amount of additional power over patients and their well-being.

Rather that creating a law that would both protect patients from harm and protect the deeply held values of clinicians, the Medical Ethics Defense Act puts patients on the chopping block and prioritizes the beliefs of people who already have immense power to influence health outcomes.

The lawsuit comes as the US measles outbreak swells to the highest numbers in 33 years. The outbreak, fueled by low vaccination rates in West Texas, has been worsened by RFK Jr’s slow and waffling response. While eventually admitting vaccination is effective, he simultaneously pushed for unproven use of vitamin A and praised physicians using unproven interventions on kids. Children’s Health Defense, the anti-vaccine organization founded by RFK Jr, capitalized on the deaths of two young children to maximize their media outreach undermining vaccination.

At the center of the AAP’s lawsuit is Jane Doe, a pregnant physician who has been advised to be vaccinated against COVID-19, but who has had difficulty accessing the vaccine due to RFK Jr’s Secretarial Directive. The Directive suddenly removed access to COVID-19 vaccines for children and pregnant people.

The lawsuit alleges that HHS violated the federal Administrative Procedure Act, a U.S. law that establishes procedures for agencies to use when making rules. They aim to show that the changes to vaccine recommendations is unlawful.

Here’s a message from the president of the AAP, Dr. Susan J. Kressly: Protecting Kids: Why Pediatricians Are Suing the Government

Summary of the Case

The case was filed in the US District Court for the District of Massachusetts.

Read the filing here.

Plaintiffs:

• American Academy of Pediatrics

• American College of Physicians, Inc.

• American Public Health Association

• Infectious Diseases Society of America

• Massachusetts Public Health Association D/B/A Massachusetts Public Health Alliance

• Society For Maternal-Fetal Medicine

• Jane Doe: “Plaintiff, Jane Doe, is a physician working in a hospital where she puts herself at risk of infectious diseases every day to care for patients and save lives. Jane Doe is also more than 20 weeks pregnant. Although she was vaccinated against Covid before becoming pregnant, her doctors have advised her to get another dose of the vaccine later in pregnancy to better protect herself and her baby from contracting this deadly disease. Pregnancy increases the risk of severe illness and complications from infectious disease, including preterm birth and stillbirth. However, the Directive creates barriers to access to the vaccine and has left Jane and her husband overwhelmed with stress and uncertainty. Her worries are not just for herself, but also for the health and safety of her unborn child.”

Vs.

• Robert F. Kennedy, Jr., in His Official Capacity as Secretary of the Department Of Health and Human Services; United States Department of Health And Human Services; Marty Makary, in his Official Capacity as Commissioner of the Food and Drug Administration; Food And Drug Administration

• Jay Bhattacharya, in his Official Capacity as Director of The National Institutes of Health; National Institutes of Health

• Matthew Buzzelli, in His Official Capacity As Acting Director of Centers For Disease Control and Prevention; Centers for Disease Control and Prevention

Why the AAP Is Suing RFK Jr.

Key Issues from the Filing

1. On May 27, 2025, Defendant, the Secretary of the United States Department of Health and Human Services, Robert F. Kennedy, Jr. (the “Secretary” or “Mr. Kennedy”), announced in a post on social media site X that he “couldn’t be more pleased that, as of today, the Covid vaccine for healthy children and healthy pregnant women has been removed from the CDC recommended immunization schedules.” Unless the Secretary's baseless and uninformed policy decision is vacated, pregnant women, their unborn children, and, in fact, all children remain at grave and immediate risk of contracting a preventable disease. This decision immediately exposes these vulnerable populations to a serious illness with potentially irreversible long-term effects and, in some cases, death. This is not a hypothetical concern, but a pressing public health emergency that demands immediate legal action and correction.

2. This announcement, from the person who leads the agency charged with “enhanc[ing] the health and well-being of all Americans,” stands in stark contrast to his sworn testimony only two weeks prior before Congress that “I don’t think people should be taking medical advice from me,” and “what I would say is my opinions about vaccines are irrelevant.”

3. The Secretary promised multiple times during his Senate confirmation process that: “If confirmed, I will do nothing as HHS Secretary that makes it difficult or discourages people from taking vaccines.” The final agency action that he announced on X on May 27 is documented in a “Secretarial Directive” that bears the Secretary’s signature and is dated May 19, 2025 (the “Directive”). The Directive breaks the promise that the Secretary made to the Senate and the American people not to make it difficult to get vaccines or discourage them. The Directive, unless vacated, will result in preventable deaths, including the unborn and newborns under six months old.

4. The Directive is but one example of the Secretary’s agenda to dismantle the longstanding, Congressionally-authorized, science- and evidence-based vaccine infrastructure that has prevented the deaths of untold millions of Americans.

5. The Secretary’s dismantling of the vaccine infrastructure must end, and halting this effort begins with vacating the Directive.

6. The Directive was a final agency action justiciable under the Administrative Procedure Act, was arbitrary and capricious, and has caused irreparable harm to the Plaintiffs in this action. That final agency action must be vacated.

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The Filing Lays Out Why this Case is Needed

1. The Secretary’s Actions To Undermine Trust In Vaccines

2. The Secretary’s Stacking Of The ACIP: The sudden restructuring of the ACIP with people sympathetic to RFK Jr’s views.

   “Only one of the eight met the qualifications for ACIP membership articulated in the ACIP Charter… The other seven do not possess the required scientific and medical expertise to serve on ACIP… None of the new ACIP members were required to follow the rigorous application process to become an ACIP member. Historically, the application process to become a voting ACIP member has taken up to two years. The Secretary filled ACIP with new members in two days.”

3. The Secretary’s Arbitrary and Capricious Directive

   No representative of the CDC or ACIP appears in the video, even though CDC and ACIP, not the FDA or NIH, have responsibility for making recommendations as to which vaccines are added to or removed from the CDC’s immunization schedules.

4. Injury To The Plaintiffs

   Pages 28-36 lay out how all of the plaintiffs in the case have reason to bring this complaint.

   The Directive has adversely affected the physician-patient relationship because, inter alia, it has injected mistrust, misinformation, uncertainty, and confusion into that relationship, putting physicians in the conflict position of either advising patients on what they believe is the proper standard of care or adhering to conflicting federal guidance. The Directive will also result in decreased rates of vaccination, increased rates of transmission, long-lasting illness, and ultimately deaths among pregnant women, unborn children, and all children – deaths that could have been prevented.

Causes of Action

• Violation of the Administrative Procedure Act – Arbitrary & Capricious

• Violation of the Administrative Procedure Act – Not In Accordance With Law

What’s at Stake: Vaccine Access and Public Trust

I hope this suit is successful as soon as possible. Without access to vaccines, we are going to see even worse outcomes from vaccine-preventable diseases - COVID, influenza, measles, RSV, pertussis, and more. But it won’t be because those diseases have become more virulent, but because our government denied us access to effective medicine. Despite RFK Jr’s claim to want to restore public trust in public health, he has instead rapidly dismantled some of the government’s core prevention tools to keep America healthy, by literally preventing the prevention of diseases.

By allowing these diseases to multiply unchecked in an under-vaccinated population, in addition to seeing more morbidity and mortality from these diseases, the diseases will mutate and may become harder to control.

These are not risks we can tolerate.

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For anyone who listened to The Retrievals, it’s painfully obvious how medical misogyny shows up in healthcare, not just in fertility care, but in every space where women seek medical attention.

Season 2 will be released this week on July 10, 2025. The 4-episode series covers ineffective pain treatment during cesarean sections.

Why The Retrievals Still Resonates Two Years Later

I wish that all it took was an incredibly well-researched and produced podcast to change medicine. But cultural change takes introspection and time. Pervasive stigma about women’s health, healthcare workers’ poor education of women’s pain, paired with the hidden curriculum of medical misogyny, fuels ongoing inadequate care for patients. While some progress has been made in the last two years in recognizing this issue, the losses in women’s health and safety have been overwhelming.

Women’s pain is often ignored, dismissed, and discounted by healthcare professionals. As an anesthesiologist, feminist, and patient, these are issues that matter to me. I want to keep discussing, exploring, and changing these beliefs in my profession.

In medicine, many clinicians still believe that women have a generally higher tolerance for pain than men. In a 2014 study of 2400 women with chronic pain, 90% of women reported feeling the healthcare system had discriminated against them, and 84% felt they were treated differently by doctors because they are women.

Women have been trained to tolerate more pain than men. If women do not perform pain as expected, we are labeled hysterical, overly dramatic, and liars. There is no shortage of patient testimony of how women’s pain continues to be dismissed by healthcare workers. In medicine, we often tell women, in ways overt and hidden, that their pain doesn’t matter.

This dismissiveness contributes to treatment bias and diagnostic delays. I know too many women whose pain was trivialized, and eventually they were found to have advanced cancer, cancers that could have highly treatable and even curable if they’d been taken seriously earlier. This same gender based mistreatment impacts gender diverse people, such as in trans broken arm syndrome.

The more we understand about medical misogyny, the better we can advocate for accurate and safe care at every clinical encounter. The Retrievals came out two years ago and continues to serve as a touchpoint for conversations around how women’s pain is chronically undervalued and dismissed.

Catching Up with The Retrievals

When the episodes first came out, I wrote an analysis of each one from my perspective as an anesthesiologist-ethicist.

Catch up on them before the new Season drops this week.

The Retrievals Season 2

I’m still eagerly recommending that my students and trainees listen to the podcast, since it provides such an accessible and thoughtful analysis of how gender impacts the perception of women’s pain. The show gives many people a shared set of stories and language around what it feels like to be medically gaslit for seeking much needed and desired care.

I’m thrilled to see that The Retrievals is returning with another deep dive in Season 2 - this time into failed pain management during cesarean sections.

Season 2 of the Retrievals starts this week on July 10. I’ll be listening and sharing my thoughts with all of you.

Here’s what I’m reading, watching, and loving this week. I hope you do too.

Reading

Abortion

1. Blood Transfusions for Texas Miscarriages Increased by Over 50% by

   • Dear reader, blood transfusions are not benign. This degree of increase in transfusions is an indicator of how far we are from providing high-quality care to these patients.

2. People in states with abortion bans are twice as likely to die during pregnancy by Shefali Luthra

3. Nearly 1 in 4 out-of-state abortion patients come to Illinois, new report finds by Kaitlin Washburn

   1. Data used in this article is sourced from Stability in the Number of Abortions from 2023 to 2024 in US States Without Total Bans Masks Major Shifts in Access by Isaac Maddow-Zimet and Kimya Forouzan

4. Conservatives Think This Study Will Kill Abortion Pills by Jessica Valenti

American Federal Budget Cuts

1. The Cruelty of the OMB Budget Proposal: An Advocacy Guide for Public Health by Thomas Farley

2. Death By A Thousand Budget Cuts: From cancer screening to outbreak response, programs saving millions of lives are being eliminated, and your community will pay the price at

3. This list of terminated USAID awards should break your heart. New study finds cuts will cause 14 million deaths by 2030 from at Inside Medicine.

4. Scientists fear Trump administration cuts to NIH could impact the health of Americans for generations by Sharyn Alfonsi

5. Fired, rehired, and fired again: Some federal workers find they’re suddenly uninsured by Andrea Hsu

Public Health

1. USA FDA asks Novavax to complete new clinical trial for delayed COVID-19 shot, WSJ reports by Reuters

2. With Sadness and Resolve: Why I Resigned as Chief Medical Officer of an NIH Institute and What Comes Next by Joshua P Fessel

3. No, RFK Jr., Autism Doesn’t Need a Cure by Gisselle Ramirez

Knowledge Accessibility

1. NIH Public Access Policy Now Mandates Zero Embargo Effective July 1, 2025 by the CITI Program Staff

2. Book bans aren’t stopping at libraries — now Texas is targeting bookstores by Brammhi Balarajan

Health Conspiracies, Influencers, Misinformation

1. Marianna in Conspiracyland Podcast (ok so this is listening, but whatever)

2. 15 million Americans take supplements that may be toxic to the liver by Sam Page

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Watching

1. Judith Butler on the beginning of feminism

2. RFK Jr. & HHS: Last Week Tonight with John Oliver (HBO). RFK Jr is a nightmare for American health. John Oliver does his thing in this video.

Loving

1. Don’t Normalize My Little Girl’s Pain

2. PhD Timeline from xkcd.com. I hate the reality that led to this cartoon, but I do love how cartoonists use their brilliance to make us look at what is uncomfortable in a new light.

   

3. Quilters are stepping up their game. I love crafting and am forever impressed by the complicated art folks make from colorful scraps of fabric. This is pretty incredible.

What are you reading, watching, and loving this week? Drop it in the comments.

Zeest writes extensively about the impact of Long COVID and what it’s like to become someone with a chronic disease as a physician. I highly recommend you check her work out, if you’re not already familiar. She’s awesome!

Long Covid, MD

Dr Zeest Khan, a physician with Long Covid, simplifies our complex healthcare system, explores science-based treatment options, and learns to navigate life with chronic illness.

By Dr. Zeest Khan

Thank you , , and many others for tuning into our live video! Join me for my next live video in the app.

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In this essay, I’ll break down Medina v. Planned Parenthood South Atlantic, helping you understand the Medicaid regulations at issue and failed past attempts by anti-abortion states to defund Planned Parenthood, Medina’s impact. I’ll contextualize it in South Carolina’s abysmal maternal and infant health statistics, and call out the implications for patient autonomy.

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A Blow to Patient Autonomy

A win for the conservative anti-autonomy movement, Medina v. Planned Parenthood South Atlantic has stripped Medicaid recipients of the ability to sue when the state denies them access to qualified providers.

The court was asked, “Does the Medicaid Act’s ‘any qualified provider’ provision unambiguously confer a private right upon a Medicaid beneficiary to choose a specific provider?” A private right of action essentially grants individuals the power to seek legal recourse and remedies for harm they've experienced due to a breach of certain legal obligations.

In the 6-3 decision down predictable ideological lines, Justice Neil Gorsuch and the other five conservative justices decided no: a person does not have the right to sue the state for denying access to Planned Parenthood as a provider. (Thomas wrote his own dissenting opinion.) Justice Ketanji Brown Jackson dissented from the court’s ruling, joined by Justices Sonia Sotomayor and Elena Kagan.

The decision removes a key provision that protects patients from bad-faith limitations placed on Medicaid beneficiaries. This may be one of the most consequential healthcare decisions, not just of this SCOTUS season, but for years to come. This decision places low-income Americans at an extremely worsened risk of poor care under the direction of hostile states to social benefits.

Medicaid, the “Any Qualified Provider” Rule, and Patient Choice

President Lyndon B. Johnson signed the Social Security Amendments of 1965, commonly referred to as the Medicare and Medicaid Act, into law. It established Medicare, a health insurance program for older people, and Medicaid, a health insurance program for low-income Americans and people with disabilities. The program is administered by the states. Medicaid, in particular, was made for individuals and families “whose income and resources are insufficient to meet the costs of necessary medical services.”1

When providing federal funding, the government imposes conditions for participation in the program. These over 80 conditions have evolved since the beginning of Medicare and Medicaid. To provide and bill for Medicaid-eligible services, hospitals and clinics must comply with these restrictions. This allows medical care for the least well off in American society to be provided by clinicians and organizations with the skillset and resources to provide care.

One of the long-standing requirements for participating in Medicaid is that patients have the right to choose their provider, so long as that person is qualified to provide that care. The Social Security Act says Medicaid beneficiaries generally have the right to obtain medical services “from any institution, agency, community pharmacy, or person, qualified to perform the service or services required . . . who undertakes to provide . . . such services.” The “any willing provider” or “free choice of provider” provision, until Medina, required state plans to allow patients to seek Medicaid services from “any institution, agency, pharmacy, person, or organization that is (i) qualified to furnish services and (ii) willing to furnish them to that particular beneficiary.2

Abortion Access and the Targeting of Planned Parenthood

Since shortly after the legalization of federal abortion access under Roe, federal regulations have restricted coverage for abortion services. The Hyde Amendment, introduced in 1976 and enacted in 1980, restricts the use of federal funds to pay for abortions, with exceptions only for cases of rape, incest, or when the mother's life is in danger. Shortly after taking office, Trump released an executive order reinforcing Hyde.

Defunding Planned Parenthood has been a right-wing/conservative aim for decades. In the wake of a sensationally edited video created by anti-abortion advocates in 2015, six states tried to bar Planned Parenthood from participating in their Medicaid programs. Under Hyde, the organization was already barred from using federal money except for an extremely limited number of abortions, but states argued these clinics did not meet Medicaid standards, claiming that Planned Parenthood was engaging in illegal activity and therefore unqualified to deliver care. Medicaid regulations do not define who is qualified to deliver care, leaving that up to the states.

In response, the Centers for Medicare & Medicaid Services (CMS) issued a letter clarifying that states could not use a biased approach to target certain healthcare providers (abortion providers) and that they must comply with patients’ freedom of choice. The government states that a qualified provider must be based on their “capability of performing the needed medical services in a professionally competent, safe, legal, and ethical manner.”

States claimed this prevented them from regulating the practice of medicine. At the time, CMS called them out on this nonsense. The requirement to ensure patient choice of provider does not prevent the states from regulating the practice of healthcare appropriately. States still need to establish and enforce provider standards and take action against providers who are genuinely unfit for practice or who do not appropriately bill for services (engage in Medicare fraud). Medicare beneficiaries deserve high-quality care. Being low-income should never be used as an excuse for inadequate care from charlatans or criminals.

In his effort to appease anti-abortion Christian conservatives, the letter was rescinded in 2018 under the first Trump administration. Several federal lawsuits followed, questioning whether patients have a private right of action against states that excluded qualified providers. SCOTUS declined to hear one of these cases, leaving lower court rulings in effect. The Medicaid regulations remained in effect and open for interpretation, leading to the Medina case.

What the Supreme Court Decided in Medina v. Planned Parenthood

Previous attacks on Planned Parenthood focused on whether Planned Parenthood was unqualified under Medicaid because the clinics also offer abortions. In Medina, instead of going after providers as unqualified, the case attacked patients’ right to choose a qualified healthcare provider at all.

In 2018, citing state law prohibiting public funds for abortion, South Carolina determined Planned Parenthood could no longer participate in the State’s Medicaid program. Julie Edwards, a Medicaid recipient, wanted her gynecologic care to be provided at Planned Parenthood.

Edwards and Planned Parenthood sued the state3, claiming the exclusion of Planned Parenthood violated the any-qualified-provider provision. They brought a class action suit under the § 1983 Civil Rights Act of 1871 “to vindicate rights secured by the federal Medicaid statutes.” Applying for relief under §1983 generally requires a violation of rights protected by the Constitution or created by federal statute, caused by conduct of a ‘person’ acting under color of state law.

South Carolina was represented by John Bursch, a lawyer with the far-right Christian legal advocacy and training group Alliance Defending Freedom (ADF).4 The group, responsible for ending the federal right to abortion, enabling businesses to discriminate against gay people, and allowing states to ban gender affirming care for minors, is on a crusade to end abortion and LGBTQ civil rights in every nook and cranny of America.

Planned Parenthood provides a host of preventative healthcare services beyond abortion and has been able to offer those services to Medicaid patients. The organization provides family planning care, contraception services, vaccinations, sexual education, testing and treatment for sexually transmitted infections, initial prenatal care (and referrals for ongoing care), as well as screening for cervical and breast cancer. As a Title X recipient (since 2022), Planned Parenthood of South Carolina provides services that are voluntary, confidential, and provided regardless of ability to pay.

In their case, South Carolina conceded that Planned Parenthood could receive Medicaid funding if it shut down the provision of abortion. This means the State aims to remove specific qualified doctors who are willing to provide a wide range of services to patients, only because the State disagrees with access to a specific safe, effective, and legal healthcare service (abortion).

People who receive care via Medicaid already face significant barriers to care and limited choices – not all providers accept Medicaid patients. Because Medicaid reimbursements are significantly lower than those for private insurance, there are already too few clinicians who accept Medicaid.

By allowing the state to bar Planned Parenthood from providing Medicare services via qualified medical providers solely because the clinic also provides abortions, the state will significantly decrease care options for its own, already underserved population.

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South Carolina’s Poor Health Outcomes for Moms & Kids

South Carolina remains one of only ten states to have consistently refused to expand Medicaid access under the Affordable Care Act (ACA). This year, that may change, as the legislature introduced a bill in January to allow South Carolinians with incomes up to 133% of the federal poverty line to use the service. (Given the $1 trillion cuts to Medicaid proposed in the No Good, Very Bad Bill being negotiated in the Senate this week, South Carolina may have come to the party far too late to help its people.)

Poor health outcomes for mothers and babies are significantly related to poverty and other social determinants of health. Across South Carolina’s 46 counties, the estimated poverty rate ranges from 8.3 to 36.7%, with an overall median rate of 14.0%. The estimated poverty rate for children aged 5 to 17 ranges from 10.0 to 49.7%, with a median rate of 18.4%. According to Children’s Health Data, more than 40% of children in the state rely on the Children’s Health Insurance Program (CHIP)5, and 36% of families with children in the state report being unable to afford nutritious food or to eat at all. For South Carolinians who are able to work, many rely on Medicaid because workers are paid so poorly and in jobs that do not offer private health insurance.6

South Carolina has 1.2 million women of reproductive age and a very high Maternal Vulnerability Index (MVI). 16.1% of South Carolina moms receive inadequate prenatal care. Five counties in the state are maternity care deserts, without access to any hospitals, birthing centers, or obstetricians, and 12 counties have low access to such care.

The maternal death rate in the state is 32.3 deaths per 100k births, significantly higher than the already poor national average of 23.2%. March of Dimes scores each US state based on its preterm birth outcomes. They rank South Carolina 44^th out of 52 districts and grade it F for a preterm birth rate. The infant mortality rate is also higher than the national average at 6.8% per 1000 live births. There are significant racial disparities in maternal and infant outcomes.

In an analysis of US states’ abortion policies compared to maternal health outcomes, states with more restrictive abortion policies also tend to have higher rates of maternal mortality. Additionally, states that restrict state Medicaid funding for abortion are associated with a 29% higher total maternal mortality.

South Carolina already drastically limits abortion access, banning it beyond 6 weeks, imposing mandatory waiting periods, and medically unnecessary ultrasounds. The State bans the use of telehealth to obtain medication abortion pills, and only physicians can provide abortion care (excluding other qualified and trained professionals, such as CNMs, NPs, and PAs), among many other barriers. South Carolina also imposes targeted restrictions on abortion providers (TRAP laws), requiring unnecessary standards such as corridors to be a certain width and that providers have admitting privileges at a local hospital.

Planned Parenthood has been plugging holes in the US safety net for decades. The organization’s health centers are major sites of care, especially in areas where other options are limited or unavailable. Seventy-six percent of centers are located in rural, medically underserved or areas with shortages of healthcare professionals. 53% of patients served rely on Medicaid or the Title X Family Planning Program. Two out of three patients reported that publicly funded health centers, like Planned Parenthood health centers, were their primary source of medical care. In a survey of patients from two Planned Parenthood health centers in Kentucky and Louisiana (states likely to follow South Carolina in excluding PP from Medicaid), 60% did not have a regular source of health care besides Planned Parenthood.

Autonomy, But Only for the Privileged

Autonomy is one of the four oft-cited pillars of bioethics. Autonomy – the ability to make an uncoerced and free choice about one’s healthcare – is an especially valued bioethical principle in American culture. In many ways, autonomy dominates American bioethical discourse.

Medicaid should include policies that ensure patient autonomy. The decision in Medina v. Planned Parenthood assaults patient autonomy on multiple fronts.

• The state leaves patients who would otherwise use Planned Parenthood with fewer options in an already limited pool of willing providers.

• For some patients, this will mean no access to any qualified provider at all. You can’t make autonomous choices about health when you have severely limited or no access to alternatives.

• This gives states the ability to regulate patient access to numerous Medicaid services in a discriminatory fashion.

• Patients will no longer be able to sue for access choice. Given the lack of private action available to patients, they have one less mechanism to compel states to follow federal regulations.

Medina’s impacts on Medicaid access far beyond reproductive healthcare, making many of the federal regulations around the safety net essentially unenforceable. This means that when the federal government does not step in to enforce patient access to a “free choice of provider” – not just for reproductive health but for any healthcare - patients also do not have access to sue for violations of their access.

This decision dismisses the dignity of low-income Americans, in particular, of low-income women of color. It further compounds the significant burdens faced by low-income Americans.

• You can have autonomy, but only if you’re wealthy.

• You can have autonomy, but only if can afford to pay for access to choice outside of Medicaid.

• You have autonomy, but not for reproductive health.

These assaults on patient autonomy further harm other critical principles in bioethics – beneficence (offering what benefits patients), non-maleficence (preventing patient harm), and justice (ensuring equitable access to care). Certainly, the ethics of care are conspicuously absent in this case.

When patients cannot choose any qualified provider, the state is then free to drastically limit the providers available to choose from. The 2016 CMS letter highlighted discriminatory practices against qualified providers. Medina codifies this ability. States may now, with impunity, bar patients from seeking care in clinics that provide services the state doesn’t like, despite those services being legal for patients to obtain. More and more providers will now fall into a “willing but unable” category when it comes to reproductive healthcare services.

The Anti-Autonomy Court

The anti-abortion movement is an anti-autonomy movement. They have successfully stacked the Supreme Court in their favor. The court’s conservative majority appears dead set against safeguarding patients’ access to evidence-based healthcare. The court burdens Americans by refusing to uphold medical decision-making authority for those most impacted (patients) and qualified (healthcare workers).

Where will it end? South Carolina has now successfully further restricted access to Planned Parenthood’s services via Medicaid. Other abortion restrictive states will follow. Will the states now also use this ruling to strong-arm larger hospital systems to limit choices for their Medicare beneficiaries? Will any hospital that provides comprehensive care be at risk of losing the ability to care for Medicaid patients? Will there be anyone left to care for them at all?

Have you read the Bethesda Declaration?

We have!

In this Substack Live, Dr. and I discuss the letter in depth and share our thoughts on why this letter is so important. You can learn more about Dr. Salles’ lab and work on ending sexual harassment here. Her social media game is always on point, so if you’re on the apps, follow her on Tiktok, Instagram, and BlueSky.

(My absurdly small dog, Sierra Sopaipilla, also makes an appearance.)

If you’re interested, you can sign Stand Up for Science’s the complementary Open Letter in Support of NIH Public Servants.

We love citations, so here are resources for you to explore:

The Great Barrington Declaration (GBD)

• The GBD is the document that catapulted Bhattacharya to the national stage as a Covid contrarian. He’s a physician-economist who never did a residency, and prioritized the economy over many other clear human harms. In 2020, The GBD called for people to ignore Covid and go about their business while simultaneously - and without any specifics on how - protecting people who are potentially high risk for serious complications.

Advisory Committee on Immunization Practices (ACIP)

• Here’s how RFK Jr framed the firing of all the ACIP vaccine experts in a recent press release. The paywalled opinion essay in the Wall Street Journal can be found here.

• Why the Sudden Firing of ACIP Members Should Put Every Clinician on High Alert (NEJM Journal Watch)

• It will come as no surprise that after Dr. Salles and my conversation, RFK Jr then appointed 8 people (the minimum number required) to the ACIP, several of whom are well known misinformation spreaders and anti-vaccination advocates.

HIV/AIDS

• This recent KFF.org review explains how cuts to The President’s Emergency Plan for AIDS Relief (PEPFAR) and the dissolution of USAID, places the world’s containment of HIV/AIDS at profound risk.

How research cuts harm humans already enrolled in clinical trials

• AAMCNews: What's at stake when clinical trials research gets cut

Federal funding freezes and pauses threaten studies on critical ailments. ‘Real humans are being affected.’

Andrew Wakefield

• The Doctor Who Fooled the World: Science, Deception, and the War on Vaccines - Brian Deer’s excellent book on British-born disgraced doctor and founder of the modern anti-vaccine movement, Andrew Wakefield.

Attacks on Peer Review and Academic Publishing

• Science.org reporting on recent Trump Administration attacks on academic publishing.

• Back when RFK was running for presidents he said “On day one of my Presidency I am going to call all of the heads of the medical journals and threaten them with a RICO lawsuit if they don’t stop lying to the people.”

• Numerous major medical journals have received vaguely threatening letters. Here’s one of them:

Bhattacharya and his GBD bestie, Martin Kulldorff, co-founded a new journal, claiming it will be better, but it’s unorthodox - and exclusive - editorial practices appear to make it super favorable to people who agree with these Covid-contrarians.

• From Science.org: New journal co-founded by NIH nominee raises eyebrows, misinformation fears. The Journal of the Academy of Public Health claims to open up scientific communication. But its unusual editorial policies have some scientists concerned

Nutrition scientist, Kevin Hall

• NYTimes: Leading Nutrition Scientist Departs N.I.H., Citing Censorship

Kevin Hall said his work on ultraprocessed foods has been “hobbled” under the Trump administration. Scientists have been raising such concerns for months.

• This 2024 interview with may interest you:

Ground Truths

Kevin Hall: What Should We Eat?

Listen now

a year ago · 157 likes · 3 comments · Eric Topol

• Hall’s forthcoming book with Julia Belluz is called, Food Intelligence: The Science of How Food Both Nourishes and Harms Us

Gutted NIH Funding

• The HHS Fiscal Year 2026 Budget In Brief” document, sticks with plans to cut nearly 40% of the NIH’s discretionary budget to $27.5 billion. Plus, a consolidation of the agency’s 27 institutes and centers into just eight. I’m not falling for the documents claims - or graphics - claiming that these cuts will dramatically improve American health.

• ProPublica’s reporting on Science Shattered explains what these cuts will really cost Americans.

• Some funding sources have been yanked around in a high-stakes toxic relationships with a Research Funding Bad Boyfriend.

  • NIH guts its first and largest study centered on women.

  • See the timeline of how the NIH has yanked around the Women’s Health Initiative specifically.

We covered all this and so much more in our conversation. I hope you enjoy it and get something out it. Want to learn more about any of these topics? Send me a DM.

Thank you to those of you who attended Live!

Thank you , , , , , and many others for tuning into my live video with ! Join me for my next live video in the app.

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On February 19, Ms. Smith was declared dead by neurological criteria.

Due to Georgia’s barbaric anti-abortion/fetal life laws, the hospital claims they cannot withdraw the ventilator and other treatments that do not benefit Ms. Smith directly.

I Encourage You to Read

More to Hate

Of Georgia, Where Death Offers No Escape from Misogyny

Adriana Smith, a thirty-year-old woman, was declared brain dead in February. She had been suffering from intense headaches and went to Atlanta’s Northside Hospital, where she was sent home with medication. The next morning, she was gasping for air: her boyfriend called 911. But it was too late: Emory University hospital found blood clots in her brain. It was impossible to save her…

Read more

a year ago · 77 likes · 14 comments · Kate Manne

THE F.A.F.O. NEWSCAST

Adriana Smith Deserved to Be Heard: When Abortion Bans and Medical Racism Collide

Read more

a year ago · 12 likes · 1 comment · Patricia Bee

Read more about the case here:

19th News: Case of a brain-dead pregnant woman kept on life support is ‘gut-wrenching,’ advocates say: Adriana Smith’s case is the latest instance in which Georgia’s six-week abortion ban and its impacts on Black women have raised serious concerns.

Papers I Mentioned

Sperling D. Should a Patient Who Is Pregnant and Brain Dead Receive Life Support, Despite Objection From Her Appointed Surrogate? AMA J Ethics. 2020 Dec 1;22(12):E1004-1009. doi: 10.1001/amajethics.2020.1004. PMID: 33419499.

Dodaro MG, Seidenari A, Marino IR, Berghella V, Bellussi F. Brain death in pregnancy: a systematic review focusing on perinatal outcomes. Am J Obstet Gynecol. 2021 May;224(5):445-469. doi: 10.1016/j.ajog.2021.01.033. Epub 2021 Feb 16. PMID: 33600780.

Thank you!

Thank you , , , and many others for tuning into my live video! Join me for my next live video in the app.

Get more from Alyssa Burgart, MD, MA in the Substack app

Available for iOS and Android

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