The AI Death Spiral

Dispatches from the artificial intelligence hype machine whirlpool

By Alicia Puglionesi

Photo by 𝓴𝓘𝓡𝓚 𝕝𝔸𝕀.

Stories meant to showcase the inspiring potential of AI in healthcare can leave the reader in a strange, dark place. In 2022 the New York Times covered a suicide prevention app developed by Harvard psychologists to monitor high risk patients after discharge from the hospital. We follow a woman who enrolls in the study and is saved from a suicide attempt when the app cues the researchers to intervene. The psychologists explain how a continuous stream of FitBit and smartphone data, encompassing movement, sleep, social interaction, and questionnaires, can unlock clues to mental health crisis—for example, sleep deprivation could be a decisive factor. However, we also learn that the featured study participant is homeless, discharged from the hospital with a Fitbit but nowhere to go. She attempted suicide when she could no longer afford a hotel room, and it was not AI, but self-report, that alerted the research team. The story concludes at the end of the six month study, when the participant is living in a tent, charging her monitoring devices at McDonalds, and unable to find a therapist who takes Medicaid.

Like much reporting on health AI, the Times piece slots in a critical perspective—in this case, a mental health advocate who argues that patients need a human support network.  Ms. Cruz, the study participant, “does not have a network like that,” the author flatly asserts. Rather than leading toward generous resources, the app-based solution seems to affirm the inviolable law of austerity. It’s easier to imagine keeping people on 24/7 AI suicide watch than to imagine a world where we have a right to healthcare and housing.

Quickly, however, the promise of humane, affordable, convenient care folds back in on itself as story after story unwittingly reveals the harsh austerity at the core of these innovations. I’ve come to think of this dizzying journey as the health AI whirlpool.

There are hundreds of articles on the internet with headlines like “The AI doctor will see you now” and I’ve read dozens of them in an unscientific survey of the future of medicine as envisioned by tech writers, healthcare industry outlets, and news media. While revolutionary artificial intelligence products flash across the surface, the deeper current of AI hype in healthcare forms a logical loop: first, it calls out real, systemic problems in American medicine and declares a coming technological salvation. Quickly, however, the promise of humane, affordable, convenient care folds back in on itself as story after story unwittingly reveals the harsh austerity at the core of these innovations. I’ve come to think of this dizzying journey as the health AI whirlpool.

Health AI refers to a wide range of digital products that use machine learning, “deep learning”, or artificial intelligence for tasks that range from reading x-rays to filling out patient charts to predicting time to discharge. All of these uses can automate and scale racial bias in ways that are well-documented. However, some are focused on narrow clinical tasks, such as identifying a skin disease from a photograph, while others are incorporated into health systems to manage patient care, operations, and financing. The former are regulated, however imperfectly, by the FDA, while the latter are classed as internal “decision support” or “quality control” tools and are not subject to external oversight. Amid calls for stronger AI safeguards, the FDA issued guidance in 2022 that broadened its definition of “software as a medical device” to include some decision support, but these guidelines are nonbinding and disputed by industry groups.

The media tendency to frame AI as “superhuman” enshrines a set of widely varied technologies as an arbiter of medical truth. Only through lawsuits and complaints have investigators uncovered decision support tools that optimize the goals of health systems or insurers rather than patients, for instance by predicting time to discharge and pressuring clinicians to meet the algorithm’s deadline. As critical AI scholars have long argued, many AI fixes are a band-aid for systemic problems that require political solutions.

Although some health apps boast of AI’s anonymous detachment, tech industry visions of futuristic healthcare are not devoid of the human touch. Indeed, the sentimental ideal of humanity forms another circle in the logical whirlpool. A major premise of health AI, as championed in agenda-setting works such as Eric Topol’s 2019 Deep Medicine, is that AI can “make medicine human again,” reducing time spent on mundane tasks and freeing physicians for the true work of their hearts: having compassionate conversations with patients. However, we learn from the New York Times that doctors are terrible at having compassionate conversations, and that doctors themselves believe ChatGPT writes better scripts for patient interactions. (While there’s plenty of research on physician empathy, this story cites surveys conducted by a health AI startup and a communication training company making the case for their products).

A study that seemed to confirm the superior compassion of AI was heralded with headlines like “ChatGPT outshines physicians in quality and empathy.” Tellingly, the sample of human responses was culled from a Reddit forum where volunteer practitioners answer medical questions from the public. It’s possible that the fee-for-service patient portal is not much better than an anonymous, free online forum for people who have no other source of medical advice, but neither of these settings showcase the ideal of human empathy. As hematologist Jennifer Lycette writes of frantic messages dispatched during lunch and after-hours, “I know my responses to patients in the EMR are more thorough and empathetic when I’m not pressed for time and exhausted.”

The promise that AI will free us to be human and express our natural empathy quickly turns into a demand for a seamless performance of care that has to be managed by AI. For decades now, medical schools have tried to cultivate humanity in their trainees in the name of improved patient relationships, which can contribute to better outcomes. But in the absence of real agency—doctors’ ability to give patients what they need medically, patients’ ability to obtain adequate resources for good health—“humanity” becomes more like customer service, and automating it could produce a more pleasing simulacrum of humanness. After all, chatbots are engineered through multiple rounds of human annotation to optimize emotional satisfaction.

Industry outlets run countless stories echoing the idea that AI will “combat burnout” and create more time for patient care by automating documentation and charting. A hospital executive triumphantly told STAT’s Brittany Trang about a doctor who took his first lunch break in 14 years thanks to this software, but Trang cautions that quality research on AI note-taking products “amounted to brochures about return on investment.” Neither tech companies like Microsoft nor their health system customers are in a position to point out that much documentation in the US is for billing purposes, or to suggest removing the financial pressures at the root of provider burnout. Meanwhile, industry leaders are not hiding the disingenuousness of their preferred solution to the burnout they created: “While AI may take some time to replace medical professionals,” one executive concludes, “the current focus on alleviating administrative burdens is certainly a step in the right direction.”

Another logical circle: algorithms are carefully marketed as “decision support,” with the assurance that a responsible expert will parse the evidence and make a fully-informed decision in the patient’s best interest. Human oversight, health AI proponents widely acknowledge, is necessary to win patient trust and to catch algorithmic errors. Often within the same article, however, we learn that decision support technology will dramatically speed up diagnosis and treatment and insurance claims and billing, as well as scaling up patient loads. A Financial Times “AI doctor” story from 2020 quotes Richard Zane, UCHealth’s chief innovation officer, boasting that “instead of one nurse monitoring eight people on a ward, she can monitor 8,000 people at home.”

Researchers have long studied automation bias, a phenomenon where users become predisposed to accept automated recommendations. Some blame this tendency on popular faith in super-intelligent computers, but accepting an automated recommendation is also the path of least resistance. Extended human review slows down the process, and there are disincentives for seeking an “override”.  National Nurses United, the largest nurses’ union in the US, surveyed its membership and found that 24% of respondents had worked with a decision tool whose choices “were not in the best interest of patients.” Only 17% had the ability to override the decision on their own, and 34% could do so if they got permission from a doctor. 

Legal liability and public blame falls on an individual user, even when the system is doing what it was expressly designed to do.

When AI systems boast of human oversight but discourage deviation from the most efficient workflow, practitioners fall into the “moral crumple zone” of responsibility – a reference to the part of a car that crumples to absorb an impact. In 2022, a Kaiser Permanente telephone advice nurse was held negligent for a patient death that resulted from following a symptom-based algorithm, which channeled her into scheduling a virtual visit rather than in-person care. Another nurse interviewed by the Wall Street Journal explained that overriding automated protocols in her hospital could result in disciplinary action.  Her employer stated that nurses have “an ethical and professional obligation to escalate those concerns immediately,” just as Kaiser maintained that its advice nurse should have used professional judgment. These disavowals illustrate how the industry emphasis on human oversight is also a deflection of corporate responsibility. Legal liability and public blame falls on an individual user, even when the system is doing what it was expressly designed to do.

The whirlpool cycles discussed above—let’s call them the circle of humanness and the circle of responsibility—are just two examples of an obfuscating logic common to industry and media accounts of healthcare automation. The force driving this circular current is, of course, money. The promise of greater humanity through automation will not be fulfilled because that isn’t automation’s purpose under capitalism. The textbook purpose of automation is to cut labor costs while increasing production. While health AI proponents promise that their tools will reduce ever-accelerating US healthcare spending, tech companies would not be crowding around the trough unless they saw continued growth on the horizon. Abolishing private insurance would free physicians from the hell of insurance documentation, but automating it will only allow services to be billed, rejected, and appealed at a higher volume. Compassionate conversations would have to be machine-generated simply to keep up.

Echoing critiques of Silicon Valley “longtermism” put forth by critical AI scholars at the DAIR Institute, it seems that futuristic visions of cheap, superhuman automated healthcare and the threatened “end of doctors” are a distraction from the actually-existing political economy of health. Employers and institutions are adopting AI because they recognize the benefits to them of automating and surveilling to the greatest extent possible. They don’t truly expect to replace human providers with omnipotent AI. Just like in the broader tech economy, this anxiety is a lever for job displacement, fragmentation, and speed-ups. Researchers who study algorithmic bias call for building equity and racial justice into AI development, and point out that few companies put adequate resources towards preventing racialized harm in the rush to roll out new products.  Healthcare is a business where the short-term pursuit of profit is unlikely to lead to an eventual consumers’ utopia.

Even dedicated AI optimist Eric Topol sees how automation can serve to “squeeze clinicians more,” consolidating power and cutting costs at the expense of patients and practitioners. He writes that the AI-enabled renaissance of empathetic care “will require human activism, especially among clinicians, to stand up for the best interest of patients.” Indeed, it will take a fundamental transformation of the healthcare system to create conditions of fairness, justice, and effective oversight for health AI. There are larger reasons, political rather than technical, to fight for this transformation. 

The case for AI as the cure for healthcare’s woes starts from the assumption that nothing else about this extractive, consolidated, and financialized industry can be changed. It’s a magic-bullet response to overwhelming public dissatisfaction, as well as a new generation of doctors, nurse practitioners, physician assistants, and technicians increasingly politicized by their working conditions. AI fixes promise to free practitioners from paperwork so they can be more compassionate, to free them from compassion so they can be more efficient, and so on. The “AI doctor” might free patients from a dysfunctional health system, but might also free that system of the moral obligation to meet patients’ needs. Freedom is another ideal that beckons us into the AI whirlpool and then vanishes beneath the current of technological inevitability. It’s clear that health AI won’t free humanity from labor or illness, but a better world can be claimed through our labor and with our precarious bodies.  

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The Pain of Representing Pain

An interview with social scientist, Arsenii Alenichev

Arsenii Alenichev, lead author of “Assembling a global health image: Ethical and pragmatic tensions through the lenses of photographers”, spoke with Jon Shaffer about how photographers face pressures to stage, shape, and alter ‘global health’ images.

Photo by Ning Shi.

JS: Why interview photographers? Global health photographers specifically?

AA: Well, I think it goes in unison with kind of the recent wave of studies in global health that try to learn about interventions from the point of view of frontline workers, e.g. of nurses or lab technicians, and others, to see how the problems that we're dealing with are perceived by people who are doing actual labor. In terms of photography, and representation, it is photographers that produce images that would be disseminated on behalf of global health organizations. And those images are always political agents. Right? So they would always be kind of stimulating or challenging stereotypes about people, especially people from the global South. So that's why photographers because I was really curious to learn about how the stereotypical global health images are enacted in real world contexts and what are kind of challenges, or maybe like dynamics that might be overlooked 

JS: Who all did you interview? What kinds of photographers and what were their backgrounds?

AA: From all over, really. Because initially I started messaging the global health networks that I'm part of that wasn't really successful. And then I just started literally googling Global Health Photographer. And it showed me professional websites of photographers. And, you know, I saw that some of them work for WHO, you know, Unicef, I don't know, various charities. So the category of global health photographers is something I projected  onto photographers. Some resisted it, but most of them accepted it. 

The history of global health photography is largely abusive photojournalism. And in response to that, there has been the emergence of various marketing and communication teams that kind of try to moderate the images that are produced.

In the end, I interviewed like 29 photographers  from all over the world. It’s interesting that most of my informants were not white. That is something that I didn't expect because historically, you know, global health photography has been dominated by kind of, Western, mostly white photographers on parachute assignments. But, you know, I also kind of was explicit in my recruitment email that I wanted to talk about the challenges and problems experienced by photographers. Maybe that's why a lot of critical people were attracted to it. There was probably a bias or a peculiarity of the sampling. 

There was definitely a problem, you know, with global health photography: the tension between photojournalism and marketing. The history of global health photography is largely abusive photojournalism. And in response to that, there has been the emergence of various marketing and communication teams that kind of try to moderate the images that are produced. So photographers are often expected to produce a certain kind of image. 

JS: So what did these photographers tell you? What was the story? What was their experience and what did they share?

AA: Yeah, I mean, a lot of people, they were happy that they're doing this kind of job. But a lot of people, they openly said that they are in constant, tedious negotiation with the comms [communications and marketing] people.

Assignments typically contain an actual description of what images a photographer should take, like a list of images. And often the problem is that, you know, people in communications, they're often sitting in London or in New York, and they envision what the local would be let's say, in, in West Africa.  And they send photographers a shot-list of what images they need. And often photographers don't have enough time or resources to do the assignments ‘properly’. They don't often have the freedom to do things differently, to challenge those briefs.  So it kind of leads to a situation where photographers are pretty much structurally forced to stage things, assemble scenes to meet the requirements, especially for young photographers just entering the emerging field and they really want to please the institutions so they can get more contracts and build their name. And they really try to stick to, you know, the briefs. And these briefs can be, well, they can be either looking for the images of empowerment, like, you know, working class women smiling in fields while doing manual labor or the poverty porn type of images. You know, someone in misery. 

And again, for journalists, whose goal is to somewhat describe the ‘reality’ – but then the question of what reality is comes up – or to at least minimize the representational bias as much as possible. I mean, it's often an impossible task. But still, for global health photographers, this is a major problem because it's very difficult to represent local people and communities without a kind of predefined idea of how this community should be depicted.

JS: And how did they feel about that? How did they feel about those tensions, those problems, those ambivalences?

AA: Well some photographers, they were really happy because they could, you know, claim the northern pay rates, which can be like really, really a lot. Northern pay rates can be like several hundred dollars per hour. And if you and if you live in a context where $100 is a monthly wage, you can clearly see how people would kind of become local elites, almost, economically speaking. Upper middle class, definitely. 

While other people, especially younger photographers, experienced problems because they all have to compete with each other, and it’s precarious because there are not many insurances provided to photographers Compared to Western photographers. A couple of people told me that their friends died on assignments or something else terrible happened – that they got sick, that their stuff was stolen, there was no insurance – so, local photographers are now trying to kind of push back against these kinds of contracts and assignments.  Photographers try to organize and push back in terms of arguing for a more equal pay scale. So you have a situation where people are either severely underpaid or people are just being overpaid. So there's like almost nothing in between, you know?

JS: A lot of work goes into shaping, staging, sort of re-enacting local scenes to produce these images. What does this mean for the visual culture of ‘global health’?

AA: Well, in the end people sitting in the Global North offices, they envision the Global South in particular. If unchallenged, we'll just have the continuation of the same stereotypes. Again there's been a lot of criticism of the poverty porn and misery images. But now we have the emergence of, like the opposite, like the images of empowerment. And it seems that everyone is like, magically empowered at this point, which is, again, can be equally dehumanizing. Because if you just, I don't know, tell kids to smile. Or, like, make people smile for the sake of taking a photo. Again, the images are political agents. Right? 

And, I think the very goal of this article was to demystify the production of global health images because empowerment can easily be reduced to a visual practice rather than something more meaningful. Again, the discourse of empowerment is still very neoliberal. So we should even probably ditch the concept and go beyond it. But in reality, for the global health action, empowerment can be easily reduced to a visual practice, unfortunately.

JS: So you've written a lot about the challenges of generative AI [artificial intelligence] in global health. Presumably these staged images become a kind of raw training data for this generative AI. How do you think about this? 

It almost leads to a situation of, for the lack of better word, the production of “hyperfakes”, as in the situation when staged or of artificial images that exaggerate the posing, the composition, the misery, the empowerment; and those images are fed into the AI to produce another degree of fake images. So you can see that the fakery is amplified.

AA: It's actually very interesting. There is no clarity for how AI actually learns, but I think with quite some confidence we can say that some models learn from whatever is on the internet, if it's not a custom training data set. It actually creates a very interesting dynamic between what is considered fake and real. 

Because if we assume that, you know, staged images are ‘fake’ in some sense or that they're staged, right? And AI approaches those images as ‘real’ and creates fake images based on those ‘real’ images. It almost leads to a situation of, for the lack of better word, the production of “hyperfakes”, as in the situation when staged or of artificial images that exaggerate the posing, the composition, the misery, the empowerment; and those images are fed into the AI to produce another degree of fake images. So you can see that the fakery is amplified. There are already examples of real global health organizations using generative AI for marketing and communication.

—————

I want to actually step back to the question of briefs, because often photographers don't just receive the text, they often receive specific past images as a point of reference. These could be real and they also could be AI generated. So those global health images at large, they're almost like self-fulfilling, self-amplifying, in a way. AI generated images aren’t solely the output to be published in the media. They can also be the point of reference of what image needs to be taken, and to be reenacted in real life. So, yeah, I’m fascinated by these cascades of imaginations and the ways we can challenge them. 

I don't think it's very easy to challenge them, but at least we can study them and demystify them so the next time when someone looks at an image of some charity, some images of empowerment, the reader might be start questioning like, oh, how was this image taken and what was in the brief? Or, if it's an AI generated image, what was the text-to-image prompt? What was the textual medium that led to the emergence of that image? 

And also don't forget about the issues with consent and power imbalances, because a lot of what photographers reported, people often feel coerced to be in the images. If an organization that is providing care is not attainable otherwise , people often feel – at least according to photographers – that photography is a prerequisite for receiving care. Some people would even think that photography entails care – that if they're being photographed, they are entitled to something. Other people would be afraid that the act of signing something on paper would just mean that they're going to lose the house, because, you know, signature in itself is a very interesting social practice. It has very different local meanings. Photographers also often reported that the consent forms become increasingly complex to the point of almost being impossible to explain in a lay manner. It's just hard. Yeah. 

And photographers reported that images are sometimes just, like, problematically recycled. One of the most striking quotes came from West Africa, and the person told me that he took photos of a pediatric patient, a girl who passed away. But the images, they became the commodity of an institution. They became pretty much like a photo bank type of image, like a stock image, that has now been circulated and they cannot take it down. The same person told me that some of the images that he took in West Africa, they've been used by a major global health organization to depict something in East Africa. Which basically amplifies the harmful idea that, you know, ‘Africa is a country’ – just savannah from one ocean to another across the continent. 

In relation to beliefs and ways in which they are often detached from reality, one photographer told me that they were asked to produce an image of a baobab tree in South Africa. But the image that they sent them was from Madagascar. This shows me how stereotypical images of Africa are kind of envisioned by the [NGO] communications people. I think photographers should have more agency into the ways their context should be represented. That's kind of one of the takeaway messages.

JS: What needs to change or what can change about the production of global health images and their circulation? 

AA: I think the radical solution to ensuring ethicality of global health images is to make sure that we don't use them at all. Why do we even need those images? 

And if we look at the postcolonial history of the Global South, the emergence of global health, photography can be linked back to things like structural adjustment policies. When the fragile postcolonial national health care systems were pretty much undermined by private-public partnerships. Photography was central to those partnerships. They always need images to show because they exist in a circumstance where those organizations require donations. So to receive those donations, they require emotionally triggering effects, triggering images. 

In my opinion, global health photography and global health images are an indirect product of structural adjustment policies; one of its many manifestations. 

In reality, I think what needs to change is for there to be a robust frontline health care system that is resilient and adaptive for everyone. Then, you wouldn't even need to commodify those images. So global health photography would be literally just reduced to photojournalism, you know? 

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Medical Debt Is An Instrument of Suffering

By Luke Messac

I have seen patients with large, fungating masses, tumors that spread for months, growths that reek of dead flesh. These are the excruciating outrages that I had seen in century-old textbooks and in medical deserts in the world’s most impoverished places. But now I saw these masses in the United States of America, on the bodies of patients who considered themselves middle class. They festered because those afflicted by them feared the toll of medical debt on their families if they sought care.

We know that medical debt, and fear of debt, leads people to delay and forgo necessary medical care. For some, this isn’t even a choice, as health care facilities can refuse to treat patients with unpaid bills. Patients in debt are pursued with a punitive zeal that harkens back to Dickensian tales of immiseration. Hospitals sell debt to the highest bidder, to buyers who see patients as nothing more than figures on a spreadsheet. Hospitals and their collectors file lawsuits against their low-income patients, seize their bank accounts, garnish their wages, foreclose on their homes. They even seek the arrest of patients who do not appear for their court dates. Even after a patient dies, the grieving spouse is held responsible for their debts. These are the tools of a carceral apparatus, not a caring institution.

Our present is a tragedy, in part because these practices lead to missed opportunities for timely cures, for longer and more fulfilling lives. The dead brain tissue from delayed presentations for stroke and the infarcted heart muscle from forgone care for heart disease leads, inexorably, to needless suffering, to capabilities lost, to loving relationships cut short.

Our present is also a tragedy because medicine remains, in our collective imagination, so much more than a transaction. There is, in our secular world, still something of the sacred in these relationships between patient and doctor and nurse. When we are patients, we cannot help but be vulnerable. We offer up a part of ourselves to the care of others, in part because we are in such a state of need, but also because we hope the professionals caring for us see this care as an end in itself and not just as a means to remuneration. Those we turn to for care are, we hope, not mere moneychangers in the temple of healing.

Today, much of the ugly work of aggressive and punitive debt occurs without the active participation of those whose work it is to care. Debt collectors and hospital executives do not consult doctors before they take patients to court. But our ignorance can no longer be an excuse. Passive assent does not free us from responsibility. We must take sides, and if doctors are, as Virchow argued, the “natural attorneys of the poor,” we know what side that must be. Medical debt is a grotesque idea with even more grotesque real-world consequences. The only moral choice is to work to put an end to it.

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Two Kinds of Debt: The Enforced and the Possible

By Zackary Berger

David Graeber, in his book Debt: The First 5,000 Years, argued that debt was moral and social, not just economic. This sort of obligation implies a reciprocal relationship, said Graeber. In everyday life, he pointed out, people do each other all sorts of favors without the expectation of monetary payment, or the record-keeping that would make it possible. I loan you a cup of sugar, and later you give me a ride to the train station. Monetary debt, policed by institutions of control (and, said Graeber, enforced by violence), is less bidirectional, or at least less encumbered by expectations of payback in anything but currency.

Medical debt, like debt in general, comes in various flavors. I am most familiar with two kinds of medical debt. I think, first, of organizations based on mutual aid and reciprocal acts of giving. So many exist all around us that we don’t take time to realize (I am speaking to myself as well). Groups collecting funds to help renters keep a roof over their heads. Organizations distributing masks and Covid tests. Those who collect and distribute medications which are overpriced and underdistributed. Volunteers who deliver one-on-one healthcare. 

Of course, the second kind of medical debt is protected by thick walls of power and money. This kind of debt is enforced by law and politics, and depends on the mistaken notion that healthcare should, must, cost money – and, what’s more, that those with money should get better care, quicker care, more care than those without. 

My patients are victimized by this second kind of medical debt. My institution, and others, sue them to squeeze every dime out of them. Their pay is garnished. Undocumented people without enough money to pay rent or buy food get bills from my employer in the thousands of dollars. This is done automatically; no one’s name is signed to these bills. It is what capitalist hospitals are expected to do.

What if, instead, we considered all of us bound in a reciprocal web of debt for our mutual health? This thought is already out there, it’s as old as the most ancient philosophical and religious texts, and has even been brought to fruition in a small scale, here or there; and even on a national scale, rarely. 

During the roughest seas of the Covid-19 pandemic, in 2020 and 2021, there was a brief flash of moonlight on the waves which illuminated what was possible in this country. I am straining my eyes to see that flash again, but time and again I see it is just the blinking of my computer screen as I bill an encounter for the benefit of my employer. 

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Stuck with Nearly $17k in Unfair Medical Debt, What Could He Do?

The hospital didn’t tell him the price. His insurance wouldn’t pay. Then they put him nearly $17k in debt.

By Jason Silverstein

Daniel Hill couldn’t sleep. Every night, he’d wake up at 2am. “My brain was racing,” he said. “I was wide awake.”

To determine if sleep apnea was the cause, Daniel was ordered by his doctor to have a sleep study at JFK Medical Center in Edison, New Jersey. 

Daniel asked before he scheduled his study how much it cost. “I was told that it was impossible to give me an accurate price ahead of time, and that I could only find out the cost after my insurance company was billed,” he said.

That was in October 2020 before the Hospital Price Transparency Rule went into effect on January 1, 2021. “Hospitals are required by the Hospital Price Transparency Rule to publicize cost estimate for shoppable services. A hospital would be violating the CMS regulation if it refuses to inform patients the price of a shoppable procedure,” explained Ge Bai, a professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health.

Daniel wasn’t worried, though, because he was told no pre-authorization was needed for his sleep study, which is documented in a handwritten note that we obtained from Hackensack Meridian Health, of which JFK Medical Center is an affiliate. He had faith his insurance would cover it. 

“This basically makes me want to never go to a doctor ever again because the cost is unpredictable. What other thing do you buy in life without knowing the cost beforehand?”

It turned out that Daniel needed two sleep studies. The first, on October 3, 2020, confirmed sleep apnea. Daniel was billed $9,181. A second, on December 3, determined the pressure of the CPAP machine to treat it. Daniel was billed another $9,160. 

But his insurance company, Salvasen Health, refused to pay. Because of an in-network discount, Daniel’s bill was reduced by $2,751.15. Still, he was stuck with $15,589.85 in medical debt that he had no way to pay.

Since December 2020, Daniel has tried to resolve his debt on his own. He made phone calls. He contacted his insurance company. He wrote letters to the New Jersey Department of Banking and Insurance. 

It all seemed so unfair. “This basically makes me want to never go to a doctor ever again because the cost is unpredictable. What other thing do you buy in life without knowing the cost beforehand?” he said.

Daniel decided to do some investigating. To find the fair price for sleep studies in his region, he used HealthcareBluebook.com and FairHealthConsumer.org. Those sites reported the fair prices of sleep studies for Edison, New Jersey, to be $1,300 and $1,482, respectively. JFK Medical Center appeared to have charged him seven times the market rate.

On February 1, 2022, after Hackensack Medical Center sent him a debt collection notice, Daniel mailed them a formal complaint, raising the issue of the price markup. He noted that the in-network discount from his insurance ($2,751.15) would have covered the geographic market rate, freeing him of debt. But he did not receive a response.

When Daniel reached out to a law firm for help, they quoted him $600 for an initial consultation and hourly rates. “I figured I would chew through any potential savings pretty quickly,” he said.

Then, on December 26, 2022, Daniel messaged us, Peste Magazine, via Signal, sharing his story, bills, and documents. He signed a HIPAA waiver authorizing us to access and use a limited amount of his protected health information in the investigation and reporting of this story. At the time he contacted us, his medical debt was $16,963.85.

On January 12, 2023, we emailed Hackensack Meridian Health. In order to report this story thoroughly, we gave them a chance to respond and share their perspective. We also wanted to give them an opportunity to explain their price for sleep studies as well as any facts that we did not have. We emailed these questions:

—why Daniel Hill was charged seven times the fair price in the area for sleep studies,

—whether that continues to be the standard rate for sleep studies at your medical center,

—what justifies the higher price,

—how many other patients may have been charged this amount,

—and why Daniel was not told the price when he inquired with the scheduler before having a procedure Dr. Gupta advised him to undergo.

Benjamin Goldstein, Hackensack’s director of public relations, asked to have until January 19 “to research and respond,” which we granted. 

Lo and behold, on January 18, Daniel was able to speak by phone with Robert McCaskill, a customer services collections supervisor with Hackensack. McCaskill said they could bring down Daniel’s balances to “the compassionate care rate” of $908.95 per sleep study. Daniel asked them for a reduced amount of $908 instead, which they granted the next day. The final amount was $905.96.

Meanwhile, even though we provided the signed HIPAA waiver from Daniel, Mike McCauley, vice president of communications at Hackensack, gave this response to our questions:

We cannot discuss details regarding a patient's care, including the cost of services, to protect their confidentiality.  By law hospitals and health systems cannot discount medical bills, without a specific reason. However, we do offer a very generous compassionate care program.  Our team has reached out to this patient to let him know he is eligible for this compassionate care program, which has reduced his bill significantly. 

That claim—“hospitals and health systems cannot discount medical bills, without a specific reason”—struck Daniel as odd. “Seriously, they just did it for me today, they can discount bills whenever they want,” Daniel said.

Daniel seems to be right. “What the hospital meant is that a medical bill can be discounted when there is a reason. Pressure from the bargaining power of an insurers or patients (advocated by themselves or by journalists) is among the reasons a medical bill can be discounted,” explained Bai. 

While McCauley commends his employer Hackensack on extending their “very generous compassionate care program,” Daniel does not share McCauley’s admiration. “I sent a formal letter via certified mail that received no response, and called many times to various departments within the hospital looking for assistance with no success,” he said. 

As of today, Daniel’s debt is paid, after having been reduced from $16,963.85 to $905.96. “It feels like I can finally move on with my life, and I'll never make the mistake of trusting my health insurance company or a medical organization to do what's right for patients when it comes to billing,” said Daniel. 

But what remains unclear is why JFK Medical Center charged so much for a sleep study in the first place, how many others have been charged the same rate, and how many, like Daniel, feel crushed by debt and indifference. 

Peste Magazine will continue to investigate. If you or someone you know was charged what you believe was an excessive price for sleep studies at JFK Medical Center or any of the Hackensack Meridian Health affiliates, please contact us via secure messaging at 857-242-0630. 

Peste Magazine is a nonprofit corporation. We will never charge. We are here to attempt to erase medical debt and any information obtained will be used for that purpose. We demand debt forgiveness. If you have any questions, please contact our office.

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Jason Silverstein is the editor-in-chief of Peste Magazine.

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Why AI Reproduces Racist Images in Global Health

An interview with Arsenii Alenichev

Arsenii Alenichev, lead author of “Reflections before the storm: the AI reproduction of biased imagery in global health visuals,” spoke with our editor-in-chief Jason Silverstein about how AI can only create new global health images from the racist and stereotypical ones that already exist.

Image created by Arsenii Alenichev. The prompt for Midjourney, an AI image generator, was “Bill Gates saves children.” Note: the characteristics of the children were not specified.

AA:  I designed a project to look at global health visuals. I interviewed 30 global health photographers about their experiences. You know, like how the images of empowerment are created. There was a lot of staging, actually. The images of suffering, the poverty porn. I was trying to capture the moral navigations of photographers.

AI was one of the concerns. It was just when AI began to explode a year ago. There were already concerns that Amnesty International used an AI-generated image in Norway to depict police violence. 

My mentor, Koen Peeters Grietens, and I had this idea of trying to invert stereotypical global health images to kind of showcase the balances they entail. So we thought, hey, AI could actually do that. 

JS: What do you mean by invert global health images? 

AA: Simply put, there was a lot of images of suffering Black children, along the timeline when the North imposed structural adjustment policies. 

Many countries in the global South declared independence, but the international banks didn't allow those countries to establish robust healthcare systems. As part of that, there was a lot hunger. Then photojournalists came in. 

The attempt to invert those images was specifically to showcase the historical and social dimensions of how those images came into being. 

We thought we can just invert those images to showcase to people for whom it's not obvious — primarily people from the global North, because I think people from the global South understand the problems with those images. 

So we decided to invert those images, right? To create prompts for, like, Black African doctors taking care of a group of white suffering children. 

However, we quickly discovered that it's not possible because AI would always couple provision of care with whiteness and the reception of care with Blackness. 

This is because AI learns from real images, right? And the real images were so problematic. It was the poverty porn images, you know, the malnourished kid images, the suffering subject images. This is the matrix from which AI is replicating the images. And very deeply, inside algorithm there is this kind of dogmatic coupling. 

In all the instances when we ask the AI to produce white suffering children, it would only show the Black kids. It's a bit ridiculous. 

AI would always couple provision of care with whiteness and the reception of care with Blackness.

We also prompted for HIV patients receiving care and 99% of the images showed Black people. Because somewhere deep in the algorithms, they link HIV with Blackness. 

I was trying to create images of like white kids under the mosquito nets and it was just pretty much not possible. It would only show you Southeast Asian kids or someone in like “Africa.”

JS: Where does this algorithm even come from? 

AA: With the rapid emergence and development of generative AI, they pretty much took all the images on the Internet and plugged in into Super AI brain. And now AI brain in a matter of seconds can generate images based on everything that is available online. In the case of global health and like humanitarian imagery, if you ask it to produce something, it would always revert back to really problematic images.

JS: So what you're saying is because of the way that these photographs have been taken for decades, this is the image bank that that AI can use?

AA: And yeah, for sure. 

JS: It can't recombine in any other way than these stereotypes that you're talking about – the suffering African child, the Black child under the mosquito nets. And so the idea of trying to invert those its impossible? 

AA: Yeah, it's well, it's futile. I mean probably it's possible. One thing about the AI is that developers of AI, they don't know what's happening with AI. It's like a living thing in itself.

Someone in real life had to be very, very miserable for AI to reproduce that image on demand in a matter of seconds. 

All those images they're based on text to image prompts right? However, if you look for specifically white saviors type scenarios, it will tell you that, oh, this is against our community standards, we actually try to promote respectful depictions of people and their communities. However, it kind of links back to that coloniality and patriarchy are not just fixable behaviors. They're like in the very fabric of our societies, right? You cannot just ban racism at the level of textual prompts. This is very naive. 

JS: What is the the biggest takeaway? 

AA: We should actively politicize products of generative AI as political agents. WHO is already likely using AI rendered images. I spoke to several professionals in the field and I ran it through a kind of AI to detect AI. 

One of the justifications that I heard is, like, hey, it's neutral. But it's not. Because in order for those images to exist in the first place, someone miserable had to stand and be photographed. 

Someone in real life had to be very, very miserable for AI to reproduce that image on demand in a matter of seconds. 

So I think the one of the biggest takeaway messages here is that we should not pretend that those images are neutral. 

This is the problem that we see in in general with AI, which is an attempt to depoliticize it, almost not engage with like dark history of AI and the kind of social context in which it emerged. And the tangible violence that inflicted on people and communities. 

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Imagine If My Pain Was Taken Seriously

Medical gaslighting in endometriosis care.

An interview with Tracey Lindeman by Esther Moon

Esther Moon: Would you be able to tell me a little bit more about your experience of seeking care for endometriosis? What surprised you that you didn’t already know from your own experience? 

Tracey Lindeman: My experience was very long as it took hundreds of doctor’s appointments to get a diagnosis and finally get treatment. This all started with my first period which came almost too fast at the age of 11, between grade 6 to grade 7, so a time in someone’s life when they are already going through immense change. And I was like what the hell is this? It was so painful, long, and heavy, but everyone around me just said it was normal. They said that you’re supposed to be in agony, to be bleeding so much that you become anemic.That this is just the way things are for women. However, when I became a full-on adult, I realized that this wasn’t true. It’s not normal to have such awful periods, to have so much pain, and bleed so heavily. It also wasn’t just doctors that normalized the pain, but female family members and other adults around me as well. It really spoke to me how that kind of stuff gets passed down, like how bad information can sound true if it comes from the people that you trust.

EM: What surprised you that you didn’t already know from your own experience?

TL: What I was experiencing was not normal, I had done nothing to cause it, and that nothing I could have done in terms of self help would fix me. These realizations made me sad because the opposite was what was taught by everyone to myself including doctors. But when I started getting mad at the system, it helped. It helped me feel less angry at myself. Understanding that not only my experience was part of something systemic but also understanding the history behind it that makes the system operate as it does right now helped me in fighting for myself. 

EM: It really moved me to read about how a disease that women have such a high prevalence of is simply overlooked because “it doesn’t kill you.” 

TL: In the sense, yes, it will not kill you. It’s not like having cancer where you will contract it and without treatment you could possibly die within a couple of years. . But there have been people who have died by suicide, who have become addicted to other drugs and died accidentally from that because of endo. People live in constant agony for years and we don’t have any feeling of accountability because they are women or gender minorities and we think that’s just how a woman should live. It’s a lot similar to women who suffer through childbirth, through periods, or it’s the glass ceiling notion as well where women should be constantly suffering. Our society has invested a lot in making sure that other people suffer.

EM: How do you think that for patients like us, how can we gain control when there’s already an imbalance between yourself and the person in the white coat?

TL: I talk about in the book about how the biggest thing I’ve learned about was the concept of epistemic justice and how that’s used in medicine. It speaks to this idea that the knowledge you have as a patient is not considered valid information because you didn’t require it from an institution. So I would take all of this knowledge and research I have done with me and bring that sort of information up to doctors and they would simply say “Oh yeah, that’s very nice!” You end up getting put into this position where you never win good care because you’re either a pushover, or you don’t fit the “role” — you let them do whatever they want. Or you fight back and they hate you for it and withhold all the things that you want as a way of punishing you. So people try to be in that middle space but most aren’t successful at it.

EM: What kind of world can you imagine for people who have gone through similar battles? Who can be held accountable? How can we identify who is pulling the levers/keeping the system/status quo in place?

TL: It’s hard to say because endo care is horrible worldwide. It is a global failure and I don’t think it’s one person who built this misogynistic world we live in, it was a real team effort. And unfortunately, it almost doesn’t matter who did it, right? It’s who does it now, and who’s going to do it in the future.

However I think medical schools have a huge responsibility as they’re notoriously socially conservative. I need people who are training to become family medicine/primary care doctors to hear us. They need to hear from patients who have been screwed by the system, to learn about the failures they will inherit. But honestly? People always say doctors don’t have time for that…but the amount of doctors and time I’ve spent trying to explain my pain, could have decreased that burden for all of us if I had been listened to the first time. Imagine if the first time my pain was taken seriously? 

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We Need to Talk about Doctors’ Politics

By Max Jordan Nguemeni

Image by Jason Silverstein.

Last month, the American Medical Association held its National Advocacy Conference, during which participants had the opportunity to meet with various lawmakers and national leaders in healthcare. To kick off the conference's last day, Kansas' Senator Roger Marshall (R) shared his perspective on issues that matter to physicians, and on their Twitter account, the AMA thanked him for "being a leader on health care in congress." But Senator Marshall is indifferent to the suffering of poor Americans. "There is a group of people that just don't want health care and aren't going to take care of themselves," he once said, arguing against Medicaid expansion. As a member of the GOP doctor caucus, sure, he's a leader in healthcare in congress, as the AMA tweet said. A leader in making healthcare less accessible.

Before joining congress, Dr. Marshall was, unfortunately, an obstetrician-gynecologist, and in congress, he has been staunchly opposed to abortion. So how could the AMA, which professed its commitment to protecting the right and access to abortion, welcome this guy in a post-Roe world? In any case, despite the indignation and righteousness of young progressive physicians like myself, there are far more Drs Marshalls among our ranks than we'd guess. They are active in our professional societies like the AMA. They make up the majority of physicians in elected positions. And we seriously need to discuss it as a professional duty to our patients.

The discourse around physician political engagement among progressive doctors appears optimistic. Emblematic of this is the rise of organizations like Doctors in Politics and Future Doctors in Politics. Yet progressive doctors often don't want to join AMA, despite being the largest and most powerful lobby in organized medicine! The idea that we need more doctors in politics, or that *all* doctors need to be more politically engaged, coming from progressive doctors, stems from, I think, a blunt assumption that we as doctors are a mostly inherent force for good when it comes to both healthcare and social policy. After all, we went into medicine "to help people," or so we tell ourselves and assume of our colleagues. But a sober look at doctors' political engagement and the impact of politics on physicians' attitudes and practices in patient care should require us to rethink these naive positions.

The American Board of Internal Medicine Foundation defines medical professionalism as "the daily expression of the desire to help people and society as a whole by providing quality care to those in need." While many assume that "helping people" is a common goal among people who seek to enter the medical field, we are unfortunately not all committed to helping everyone. Twenty years ago, about 10% of graduating medical students did not consider access to basic healthcare a fundamental human right. Some might think of 10% as negligible – likely a conservative estimate because of desirability bias – but it isn't, considering we're talking about basic healthcare, not access to cosmetic surgery. You might think attitudes have changed over the years. But a more recent study of incoming medical students found that conservative medical students were less likely to report wanting to care for the poor, people of color, and LGBTQ people by graduation. They were also less internally motivated to control racial prejudice, had lower levels of empathy toward patients, and lower levels of patient-centered attitudes.

Beyond their ideological stances at the beginning of medical school, going through medical school impacts medical students' support towards initiatives that would help improve healthcare, especially for the poor. While fourth-year medical students support making healthcare cheaper, they're less likely to do so if it means even a small reduction in what physicians would be reimbursed. However, even the lowest-paid physicians make significantly more money than most Americans. A key predictor of this dissonance was the amount of debt students had taken on to complete their education. In her book Doctor’s Orders: The Making of Status Hierarchies in an Elite Profession, Sociologist Tania Jenkins describes medical students’ contract with society: work hard, for some, take on debt, delay gratification more than most, and in the end, earn near-guaranteed employment with a high salary. Those most afflicted by the debt burden of medical education, especially if already less progressive, likely experience health policy efforts that would reduce physician compensation as a breach of contract. This is consistent with the AMA's ethos, where physicians' political engagement, and the implicit message, is that the organization's advocacy should be about physician compensation before patient advocacy.

The impact of conservative ideology among physicians is thus felt strongly. While multiple factors shape students' specialty choices, in the end, those who enter the most lucrative specialties are also the most conservative. And they are vocal about it. For example, studies show that yearly income is tightly correlated with physicians' political contributions by specialty: those who earn more donate disproportionately to the Republican party. Physicians with the lowest earnings — pediatricians — consistently donate the most to Democrats and have a strong record of advocating for policies that would ostensibly improve everyone's health. For instance, when I started medical school in 2016, the American Academy of Pediatricians’ political platform focused on addressing childhood poverty. Almost all of its campaign contributions during the 2020 election cycle went to Democrats.

In contrast, of the ten million dollars surgeons donated to political campaigns in the 2020 election year, nearly 60% went to republican candidates amid a pandemic, despite the GOP's continuous efforts to repeal the Affordable Care Act in the preceding years. So, while in numbers, most physicians may side with and donate to democrats; we have a very powerful conservative minority among our ranks. The power of this conservative minority manifests itself among those who are elected officials, such that 14 out of 17 physicians elected in congress are republicans and disproportionately from higher-earning specialties.

Beyond political engagement, physicians' political ideology directly impacts patient care. Dr. Marshall, a staunchly anti-choice obstetrician-gynecologist, is an example. Anti-choice obstetrician-gynecologists arguably oppose patients' agency and autonomy, core bioethics principles. In a study of physicians' attitudes and treatment approaches to politicized health issues, Republicans were likelier to encourage the patient not to have an abortion. The study also explored other pressing health issues. For example, on firearms, now the leading cause of death among children and teenagers, Democrats were more likely to recommend that parents store them away from home. More recently, a study found that conservative critical care physicians were five times more likely than their liberal and moderate counterparts to say they would treat COVID-19 with hydroxychloroquine, a treatment promoted by former President Trump without robust evidence (leading at the time to real-life increased prescriptions in Republican-leaning counties), and since proven ineffective. Abortion, firearms, and COVID-19 might seem too polarizing for some, allowing us to turn a blind eye to these partisan differences. But even on less politicized matters, conservative ideology among physicians is associated with less patient-centered actions. One multi-state study showed that Republican physicians were 75% less willing to assist depressed patients' requests for exemption from Medicaid work requirements than their Democrat counterparts.

The optimists might argue that things will improve, assuming that younger physicians will be more progressive. After all, the share of physicians who are registered republicans has continued to decrease over time, matched with a steady increase in the number of registered democrats. Though financial contributions to political campaigns for some specialties have swung toward the left (partly due to an increase in women joining the field), the most recent estimates suggest that about 20% of medical students identified as conservatives. The expectation that younger generations of physicians will be, as a whole, more patient-centered than the older ones isn’t entirely true. For instance, a 2018 study found that medical students were more likely than practicing physicians to agree that physicians should sometimes deny costly but beneficial services, in line with more conservative ideology. Medical students were less likely to prioritize patient welfare over cost-consciousness than practicing physicians, thus normalizing scarcity. In other words, younger physicians may embody the kind of medicine the late Paul Farmer was a staunch critic of: one where well-intentioned people are socialized to think of scarcity on behalf of others as normal, but not for themselves or their loved ones. We may be willing to deny expensive but beneficial services to save costs but are less willing to endorse cost-saving initiatives if it means taking a little pay cut. Many would rather not take care of the poor, and a well-intentioned majority has been too socialized for scarcity. This does not bode well for our hopes of expanding access to high-quality care, especially for the poor, and addressing health disparities, as the AMA and AAMC committed to in 2020.

Physicians’ biases against the poor are highly prevalent across the political spectrum, as the majority come from high-income households. Research has shown that most medical students hold negative attitudes toward the poor. Liberals often hold conservatives in contempt, especially poor, rural conservatives. However, a key difference along the political spectrum is that, unfortunately, conservative trainees are less motivated to mitigate their biases, which ostensibly would affect how they treat (or refuse to treat) marginalized patients.

The responsibility to address the impact of doctors’ politics on patient care should not rest on individual trainees and physicians alone. Medical training is a prime opportunity to address physician attitudes toward the poor. Embedding service learning (e.g., working in a free clinic) in medical school curricula is associated with increased intention to practice in underserved communities. White students at more racially diverse medical schools become more likely to rate themselves as highly prepared to care for minority populations and value equitable access to care more strongly. Conversely, negative role-modeling from faculty (such as making fun of patients, negative comments, etc.) and an unwelcoming racial climate contribute to medical trainees’ worsening attitudes towards Black people.

Increased workload also impacts the care physicians provide along racial lines. Symptoms of burnout are associated with increased implicit and explicit anti-black biases among residents. One study found that increased cognitive load leads to physicians prescribing opioids for chronic back pain inequitably. Additionally, among the aforementioned physicians who were asked whether they would assist depressed patients with their Medicaid work exemption application, besides the impact of politics, those who described the administrative effort as neutral or appropriate were far more willing to help the patients in need with their application, compared to those who found the administrative work cumbersome. In other words, physicians’ politics impact our fulfillment of professional duties to serve patients. This impact can be mitigated or worsened by the quality of the training or work environment and experiences.

Still, while we may think of our colleagues as good people regardless of their politics, what they choose or plan to do with their power – like a lack of intention to care for the poor for various reasons, including different insurance reimbursement rates – is what they should be judged by when they are evaluated for admission into medical schools and residency programs. I recognize that is easier said than done. And certainly, people can change. But the few studies that have been done on medical trainees' attitudes suggest that our political stances don't evolve much, and our attitudes toward the poor and other marginalized groups mostly worsen during medical school, all other things being equal. It is high time that we seriously consider intentions to care for all people equitably, the internal motivation to control prejudices, and patient-centered attitudes as matters of professionalism. Furthermore, medical schools and training hospitals should build and sustain initiatives to improve trainees' and providers' attitudes toward marginalized patients (service learning, improving institutional culture, etc.) and reduce the impact of bias on patient care (such as decision-making aides, reduced workload, and increased utilization of protocols whenever possible).

Implementing a multilevel approach to addressing the impact of physicians’ politics on patient care may take a while as we generate the best evidence and best practices. But it should be of high interest to our profession, the general public, and the federal government, given how much it invests in medical education. It's worth asking: should we spend taxpayers' money on training doctors who, in turn, can pick and choose who they want to care for to maximize their earnings? Or who may use their power to restrict some patients' autonomy against bioethics principles? To borrow a phrase from my cost-conscious colleagues, Is it a good use of healthcare dollars? It's too bad nearly every doctor in congress is a Republican, working hard at limiting access to healthcare for the poor. There's no way they'd ask.

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Max Jordan Nguemeni is a resident physician in internal medicine at Brigham and Women’s hospital/Harvard Medical School. He also conducts environmental health & health services research with a health equity focus, and has an interest in issues at the intersection of science/health, technology and media. His lay writing has appeared in The Washington Post, The Boston Review, and Undark Magazine. Twitter: maxjordan_n. He is also editor-at-large for Peste Magazine.

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A Poem Read to Paul Farmer (Video)

A medical student at the University of Global Health Equity in Rwanda reads a poem she wrote to Paul Farmer, the day before he died.

By Joselyne Nzisabira

On February 20, 2022, the day before Paul Farmer died, Joselyne Nzisabira, a medical student at the University of Global Health Equity in Rwanda, read to Paul a poem she wrote for him.

We are honored to share Joselyne’s poem to Paul and the video of her reading the poem to him and his comments to her.

For Dr. Paul Farmer:

Hello Dr. Paul, 

Or can I say Doctor Humble?

Since that is what your name means

But it's not even different from who you truly are

Because you have a golden heart

We want to thank you for being a humanitarian before being a doctor

And choosing to be a health activist in a world full of inequities

And challenging the systems irrespective of how long they have been existing

Putting your patients in your tight schedulers

And inspiring each and every one of us

To be better future doctors

We want to thank you for enhancing the value of the 5s

Being the space, stuff, staff, social support, and systems

We were grateful for the morning report inputs

And the bedside teaching full of  patient-centered highlights

To the best of all, we thank you for supporting patients equitably

And being Paul every day!

Hopefully, this won't be the last time we are meeting

We love you, Dr. Paul,

Together we wish you 

 "Akazi keza"!

 [‘Akazi keza’ was Dr. Paul’s favorite statement in Kinyarwanda. It means ‘good job’ or ‘Enjoy your job’]

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Joselyne Nzisabira, who uses the pen name TheMedPoetess, is a Rwandan female medical student, currently pursuing her MBBS/MGHD degree at the University of Global Health Equity. Joselyne is passionate about global surgery, health equity, mental health, and literature.

Why are you spending so much time on a dead white guy?

By Brian Concannon

On April 30, 2022, the following remarks were delivered by Brian Concannon, a lawyer and executive director of the Institute for Justice & Democracy in Haiti, as a tribute to Paul Farmer at the Haiti Solidarity Network of the North East & St. Anastasia Haiti Support Group.

It is a great honor to join the Haiti Solidarity Network of the North East and the St. Anastasia Haiti Project today. It is also a great solace to be with you today. I miss Paul, and there is ample frustration and sadness in Haiti work these days. But it is revitalizing to spend time with old friends and new friends committed to solidarity with Haiti’s poor. 

It is hard to appropriately capture Paul’s life, but I will try with a story. Just before Christmas in 2005, Paul visited Fr. Gerard Jean-Juste, a Haitian priest, in prison in Haiti. The jailers had allowed the visit on the condition that it be a visit from a friend, not a medical evaluation. Dr. Paul and Fr. Gerry respected this condition, mostly. Towards the end of the visit, Fr. Gerry asked the guards if the two could pray together. The guards gave Paul and Gerry a little more privacy as they knelt down shoulder to shoulder. The priest took out his rosary, prayerfully. The doctor took out his syringe, and very prayerfully—at least in the doctor’s telling of the story—obtained a sample of Fr. Gerry’s blood, without the guards noticing. 

A few hours later Paul and some of Fr. Gerry’s blood were on a plane to Miami. A week later results confirmed a diagnosis from another friend of Gerry, Dr. John Carroll but denied by the Haitian government and the US government, that Fr. Gerry had cancer. A week after that, Fr. Gerry was released from prison and was in Miami for treatment. 

When Paul is remembered publicly, he is most often remembered for going to great lengths to treat the sick. He certainly went to great lengths to treat Fr. Gerry and so many others. But that day, as on most days, Paul did not see his job primarily as fighting disease; he saw his job as fighting injustice. 

Fr. Gerry was sick, but he needed Paul because he was in prison and deprived of medical treatment. He was in prison not because he committed a crime, but because he insisted on speaking out against the repression his government was inflicting on Haiti’s poor. Haiti’s government had the opportunity to repress its people because two years earlier our government in the US had overthrown Haiti’s elected government, and flown a “new” Prime Minister in from Florida to run the country. 

Paul getting Fr. Gerry out of prison improved Gerry’s health, but it also allowed him to continue to fight for justice. It allowed Fr. Gerry to speak out against policies--by the Haitian government and the US government--that kept Haitians among the very least of our brothers in terms of prosperity and freedom. It allowed him to advocate for elections, which led a few months later, to the replacement of the illegal government chosen by the US with a democratic one chosen by Haiti’s voters, and the release of Haiti’s remaining political prisoners. 

Paul saw his work as fighting for justice every other day too. When he built wonderful hospitals in Haiti, Rwanda and elsewhere, he did it to treat the sick in those places. But he also built those hospitals to demonstrate to people in our places that Haitians, Rwandans and other poor people deserve those wonderful hospitals because they have a human right to basic healthcare. Paul built the hospitals to demonstrate that the obstacles to achieving the human right to healthcare were not technical, or a lack of human resources in places like Haiti. He built the hospitals to show us that the obstacles to the human right to healthcare were an unacceptable tolerance of injustice among people in places like New York and Washington. 

Almost all of Paul’s writing was done to fight injustice. Paul is best known for Mountains Beyond Mountains, but he did not write that book. Paul was actually ambivalent about Mountains Beyond Mountains because it was not as much about justice as he wanted. When someone told Paul they had read Mountains, he would usually say “Good. Now read The Uses of Haiti, or The Pathologies of Power, or A Path Out of Poverty” or any of the other books that Paul did write, and that challenge us to directly confront the structural injustice that keeps Haitians poor, and keeps people in the US relatively prosperous. 

I met Paul’s ideas in 1995, when I read Uses of Haiti in preparation for my first visit to Haiti. 27 years later, I can’t think of another book that has been so important to my understanding of Haiti today. I met Paul in person a year later, at dinner at the Oloffson Hotel following a ceremony where he received a human rights award. At the time I was working for the Bureau des Avocats Internationaux, BAI, a human rights law firm, that was working to make Haiti’s justice system responsive to Haiti’s people. At the dinner, Paul went around the table, graciously asking what people were doing in Haiti, offering his typical enthusiastic encouragement to everyone-mostly. When he got to me, Paul gave me a severe, skeptical look. Instead of optimism, he offered a distrust of lawyers and a suggestion that Haiti’s justice system would never be made to serve Haiti’s poor. 

I was crushed. But I had fortunately read enough of Paul’s work that I could push back with his own words, just substituting legal rights and the justice system for health rights and the public health system. Paul immediately realized that the BAI was trying to make an option for the poor in Haiti’s justice system, just as he and PIH were making an option for the poor in health. Paul’s face lit up in his trademark smile, sparking a quarter century of friendship, and collaboration. We had the privilege of working with Paul on Fr. Gerry’s case, in a project in Haiti’s prisons, and advocating for a more just US policy to Haiti, among other things. Paul helped establish the Institute for Justice and Democracy in Haiti, and served on its board of directors for 18 years until his death. 

I am not sure we have disproved Paul’s conviction that Haiti’s justice system would never serve Haiti’s poor, yet. My Haitian colleagues have won some inspiring victories over the past 25 years, many in collaboration with the Haiti Solidarity Network of the Northeast. But as we all read in the news, and you hear from your partners in Haiti, injustice is a constant and overwhelming presence for most Haitians today. But after that first meeting in 1996, Paul never again opined on whether we would ultimately succeed. Once he realized that we were attacking the unjust structures, in both Haiti and the US, Paul knew that our fight would be long, and that we might not succeed in any of our lifetimes. Paul also knew that even if success is not assured, we needed to try. He knew that making an option for the poor in any domain is not only justified, it is essential. 

We hear in the US news, that Haiti is a “basket case”- a country where bad things just happen- earthquakes, assassinations, gangs, poverty, corruption. Projects fail. There is even an implication that somehow Haitians deserve this. Thinking about the basket case scenario makes me even more grateful to be with you today. Because you, like Paul Farmer, are in solidarity with Haitians. You speak with Haitians enough to know that most are wonderful people, and none deserve the misfortunes inflicted on them. You learn from them, as Paul did and I do, that bad things don’t just happen in Haiti any more than anywhere else, but that destructive policies-- many made in Haiti, but many made in the US—succeed in inflicting destruction in Haiti. Most important, you learn from your Haitian friends, as Paul did and I did, that calling Haiti a “basket case” is not an effective description of the country, but calling Haiti a “basket case” is an effective device for ducking our own responsibility to dismantle unjust structures that benefit people in the US while keeping Haitians poor. 

Over past two months, whenever I spend time reflecting or writing about Paul, I am interrupted by a vision of him in heaven. In the vision, Paul is not enjoying the company of angels or the celestial music. He is not, as Georgette hoped, resting in peace, or smiling down as Dr. Jim sees him. In my vision, Paul is looking down at me with the same severe and skeptical expression he had when he first met at the Oloffson, an expression I have learned he uses for people who could be doing better. He somehow has a slight mischievous smile too, as he asks me “Have I taught you nothing? When there is so much work to do, why are you spending so much time on a dead white guy?” 

Paul is looking down at all of us right now. But I think we can all push back and justify our coming together to Paul. We have to admit that we are here to remember him, of course. But we can tell Paul that our way of remembering him is by networking, planning, and organizing to take his work forward. We are remembering Paul when we treat the sick. We are remembering Paul when we feed the poor, or take in strangers and insist our government does too. We remember Paul when we visit the prisoners and get them out of jail. We are remembering Paul in this work because we are doing it in a way that dismantles the structural injustice that keeps Haitians impoverished. And we are really remembering Paul when work to hold our own government accountable for actions that limit Haitians ability to build a stable and prosperous country. 

Thank you

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Brian Concannon is the Executive Director of the Institute for Justice and Democracy in Haiti. Connect with him on twitter @HaitiJustice.

Don’t Mourn. Organize.

By Gregg Gonsalves

Vito Russo was a celebrated film historian. He was a gay man. Living with AIDS. In 1988, he gave a speech, “Why We Fight”, at one of ACT UP’s first demonstrations, in May, in Albany, the capital of New York State, and then later that year at the Department of Health and Human Services in Washington, DC, where a new coalition of activists from around the country descended on the agency. Two years later, Vito was dead. The speech is remarkable, but its closing still resonates almost 35 years later. He may be gone, but the words here cut like a knife:

We're so busy putting out fires right now, that we don't have the time to talk to each other and strategize and plan for the next wave, and the next day, and next month and the next week and the next year. And, we're going to have to find the time to do that in the next few months. And, we have to commit ourselves to doing that. And then, after we kick the shit out of this disease, we're all going to be alive to kick the shit out of this system, so that this never happens again.

After three years of the COVID pandemic, all I can think about is how we’ve rushed to put out fires once again. The urgency of the crisis kept those of us focusing on the local, national or global response and its deficiencies, the failures, busy day-to-day, with little time to meet Vito’s challenge to think of the bigger picture, how we got to where we are, how it all got so bad.

Health is a human right. Yes. I believe it. But the problem right now isn’t one of taxonomy. More than half of all nations around the globe have some specific, guaranteed right to health written into its constitutions and many of them fared terribly during the current pandemic. Naming health as a human right, even in the presence of legal instruments to pursue that right, is not enough. Vito points the way: our fates are in the hands of a system where we do not matter, our lives are disposable. We’ve got to look upstream to the social, economic and political factors that make us sick, keep us from being, getting well and, as Paul Farmer has framed it, we need to see it all in the context of pathologies of power.

But then what do we do? Paul’s work was in service of the poor, showing how we could do better, using academic institutions to press the case for doing more. These are all important, but where I end up after three decades doing this work is we need more than this, we need, for lack of a better term, more shit-kicking. We are locked into a political economy of health that is killing us. We need to break free. This means developing a political analysis, developing strategies to confront those inflicting structural violence in the world, building power to resist and wielding that power to make change. It takes us out of academic and healthcare settings, and makes all of us who want to make a difference, first and foremost, political actors. It’s uncomfortable for many working in clinical care and public health to consider themselves activists, but to do anything less cedes the playing field to those who made this mess, who create misery, suffering and death. There is a lot to mourn over these past three years and deeper into the past we have lived through together. But as the labor activist Joe Hill said before his execution in 1915: Don't waste any time mourning. Organize!" We’ve got to band together, in numbers that matter, to kick the shit out of this system, so that none of this ever happens again.

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Gregg Gonsalves is an Associate Professor of Epidemiology at the Yale School of Public Health and Associate Professor (adjunct) at the Yale Law School. He is also the co-director of the Yale Global Health Justice Partnership. He is a 2018 MacArthur Fellow. Twitter: @gregggonsalves. Mastodon: gregggonsalves@med-mastodon.com.

Think Ambitiously on Behalf of the Poor

By Bailor Barrie

I believe every human being deserve high quality health care, but impoverished people have been denied it most, so we need to prioritize them first. Disease causes more suffering for poor people, as such I believed that poor people should be giving preference in health care. 

I founded Wellbody Alliance and the Wellbody Clinic in eastern Sierra Leone in 2006, shortly after the decade long civil war ended because I believe that health is a human right. As a young physician, I was committed to ensure that poor people in Kono District, one of the poorest regions of Sierra Leone, have access to high quality health care. 

I knew what it was like to be poor. I grew up in extreme poverty. My family did not have enough food to eat, and my parents struggled to pay for my school fees. As a child I supplemented what little money my parents had by selling candy and kerosine. It was through these small jobs that I raised the money to attend primary and secondary school.

I understand how poverty places barriers to access to health care because most times as a kid when we got sick, we are either taken to a native doctor or went to a pharmacy for care. My mother did not do this because she did not trust modern health care, but because she could not afford it. Many families like mine do the same thing for the same reasons. I studied hard and was awarded one of two national scholarships available to students in Sierra Leone. I decided to go to medical school, which was only possible through my merit award. But even with the financial support, I faced additional financial barriers. I had to walk seven miles to school in the morning where I would borrow a textbook and copy it by hand. After my lectures, I would return home, walking seven miles. I walked in order to save money — my scholarship covered tuition expenses, but not my living costs. 

When I finished medical school, I decided I wanted to dedicate myself to supporting the poor in my country. I chose to stay in Sierra Leone, and I am grateful that I did, because in 2014, I was able to work closely with Dr. Paul Farmer during the Ebola outbreak. And throughout our time working together, I learned so much from him.  

I partnered with PIH because I believed in their mission: to provide a preferential option for the poor in health care. We spent years slowly growing our work and providing more access to care for the poorest people in Kono. Paul taught me early in our relationship to think ambitiously on behalf of the poor people I was serving. 

It was through this ambitious thinking that there would be impact in Sierra Leone. Sierra Leone has one of the highest maternal mortality ratios in the world, its health indicators are very poor, and its health system is weak. The work to strengthen the health system is challenging, but we are partnering directly with the Ministry of Health to improve access to high quality care. In the epicenter of maternal mortality, PIH Sierra Leone is building a state of the art 166 bed maternity hospital. This hospital will not only serve women and children in Kono, but will serve as a training institute where the next generation of qualified clinicians (doctors, nurses and midwives) will learn the art of medicine in Sierra Leone. In 2018, Sierra Leone had 150 physicians for a population of 8 million people. 

This is an injustice that can only be corrected with additional training programs. And the need for these programs, linked to teaching facilities and mentors, are urgently required. To strengthen such a weak health system requires bold, ambitious steps, and long-term commitments with the MOHs.

Paul once told me that not being ambitious means not considering the poor. He adds that if you ask the poor and vulnerable about what kind of healthcare they want, they will all say they want the best health care possible for anyone in the world. It is the same I would want for my family. Therefore, high quality healthcare should be available for all in the world, regardless of where you live or how much money you have.

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Dr. Bailor Barrie is the Executive Director of Partners in Health-Sierra Leone. Dr. Barrie grew up in rural Sierra Leone and was one of the first students to graduate from Sierra Leone’s new national medical school. Upon graduation, he was offered well-paying jobs with international organizations but instead he founded Wellbody Alliance in Kono district, a clinic offering healthcare to the poor in a district heavily affected by the country’s civil war. The organization grew to become a general healthcare provider offering programs for HIV, TB, maternal and child health. When Ebola struck Sierra Leone, Dr. Barrie built a partnership between Wellbody and Partners in Health that was instrumental in establishing PIH operations in Sierra Leone. In 2021, Dr. Barrie took over as Executive Director for PIH-Sierra Leone. In addition to his training as a medical doctor, Dr. Barrie holds a Master of Medical Science in Global Health Delivery from Harvard Medical School. Dr. Barrie is a PhD Candidate in Global Health at the University of California, San Francisco and conducts research on COVID-19 in Sierra Leone.

The Struggle of Many Lifetimes

By Mark Harrington

When I came of age in 1981 as a gay man in college two forces emerged which would kill and injure millions of people around the world — the right-wing presidency of Ronald Reagan which began that year, and which led to 12 years of massive cuts to US and global health; and the human immunodeficiency virus (HIV), which emerged as a pandemic and quickly became a chronic disease of the poor, drug users, and gay and bisexual men. 

Fighting the Reagan administration and its racist, misogynistic, and homophobic approach to public health, and defending people against the new pandemic caused by HIV became the joint task of a generation of young lesbian and gay activists who spent much of the 1980s taking care of dying friends. 

The political nature of this work became clear as we mobilized our communities to demand research, health care, prevention, housing, and support services for people with AIDS from local, state, and federal governments. 

Starting in 1988 when I joined the Treatment + Data Committee of the AIDS Coalition to Unleash Power (ACT UP)/New York—and from 1992 with Treatment Action Group — I began working with a like-minded group of activists to accelerate treatment research and regulation, targeting the US Food and Drug Administration (FDA), the National Institutes of Health (NIH), and pharmaceutical companies. It took 15 years of arduous research and accelerating mass death before the discovery of effective combination treatment for HIV in 1996. Now we could stop HIV in its tracks, but 95% of the world's people living with the virus dwelt in developing countries. 

Together with groups such as Treatment Action Campaign in South Africa, and later with Partners in Health among others, we struggled for the next three decades to generate government support in rich and poor countries alike to provide mass treatment and prevention for HIV and for its two most common co-infections, tuberculosis and hepatitis C. Through this work, which is the struggle of many lifetimes, I have been abled to save my own life (I was infected with HIV in 1985 and survived long enough to begin combination HIV treatment in 1996) and to participate in having saved millions of others. 

Paul Farmer, a dear friend and colleague, was born just two weeks before me. Our life's work brought each other together. He leaves a huge legacy and will be missed forever. Rest in peace, beautiful man.

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Mark Harrington was born in San Francisco. He studied history and film at Harvard, and joined ACT UP/New York in 1985. He co-founded Treatment Action Group in 1992, received a MacArthur Fellowship in 1997, and became TAG's Executive Director in 2002. He lives in New York City.

When They Need Clothes, Clothe Them

By Joselyne Nzisabira

I recall the day the sky in Butaro cried. It was a typical Monday, like any other medical school day.

Excitement, courage, and my love for medicine woke me up at 7AM to grab my white coat and get ready for the day. I was doing my internal medicine rotation and felt privileged to have had Dr. Paul Farmer, a medical anthropologist — and by-then chancellor of UGHE — in our morning reports for the past few weeks. His positive energy and love for his patients always inspired us to become better future doctors as we reflected on the cases being presented. His absence that morning left an unfillable void of not only his leadership but also his fountain of medical knowledge.

When I came back to campus from hospital rotations, I received the unfortunate news that Dr. Paul had passed away. The world mourned losing a hero, patients mourned losing a doctor, and everyone he treated humanely irrespective of their financial capacities lost a friend.

As I sat in my room grieving, a friend came in to see me and gave me the best comfort I was ever given that day. “To live his legacy, whenever you have an opportunity to help a patient, just ask yourself, what would Dr. Paul do?” she said. I haven’t stopped reflecting on it.

A week later I went back to the hospital and followed up on a case of a 52-year-old male patient. I had been assigned to him since I started rotating in the internal medicine ward. The patient has been in the ward for almost a month and was waiting for his bone marrow biopsy results for confirmation of his diagnosis.

That morning when I greeted him, I realized he was not happy yet had no new medical complaints. Part of me wanted to ignore this because I had other patients I needed to also check on but I remembered one of the values I learned from Dr. Paul is to look at patients as a whole, not just human beings in need of drugs.

What would Dr. Paul want to do at this moment? As a student who observed him talking with patients for a long time, I knew he would want to know why the patient was sad.

I made a friendly gesture and asked about his mood. He opened up and told me he needed more clothes because he only had the same outfit he has been wearing for almost a month since he was hospitalized. He also mentioned that he lost his family members in the 1994 genocide against the Tutsi, and therefore had no one else to ask for help.

One of the values I have learned from Dr. Paul is partnership. I collaborated with the hospital social workers to organize a clothing drive on campus to benefit patients including him. We received a lot of clothes that were distributed to him and other financially disadvantaged patients.

Unfortunately, my patient’s results came in confirming chronic myelogenous leukemia. Two days later, he passed away but I am glad we contributed to making his last days happier because his mood completely changed the day he received clothes.

The next time I meet a patient, I pray I don’t forget to carry Dr. Paul’s legacy. I believe I will only be a good doctor if I am a good human being.

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Joselyne Nzisabira, who uses the pen name TheMedPoetess, is a Rwandan female medical student, currently pursuing her MBBS/MGHD degree at the University of Global Health Equity. Joselyne is passionate about global surgery, health equity, mental health, and literature.

Life is Sacred and Healthcare is a Human Right

By Yassah Lavelah

As a young woman who spent years in war zones and refugee camps, I have a first-hand account and understanding of the fight for social justice and human rights. Furthermore, based on my experience as a nurse advocate who has worked in some of the poorest communities in the world for the past nine years, I can confidently say that nursing, advocacy, and social justice are three inseparable things. 

Working as a nurse, advocate for over nine years, with a specific focus on the role of maternal and infant health in community development and health delivery in low resource settings, I’ve come to realize that social justice is the best tool we can use to channel our quest for addressing the social determinants of health and healthcare as a human right.

My passion for caring and advocating are based on the values that no matter your financial, economic, religious, cultural, or social status, all humans deserve to live a healthy and thriving life.

In 2014, I had to turn down an offer from the US State Department to extend my stay in the United States, after I had completed a program at Notre Dame. I returned home to resume work at the ELWA Hospital with other nurses who were dying due to the lack of personal protective equipment and resources. I immediately began work at the only treatment facility in the country at the time under the supervision of Dr. Kent Brantley whose infection brought the Ebola crisis to the world’s attention. I attended to patients and served as the field representative of the Ministry of Health conducting workshops and lectures on prevention measures and safety.

I had worked at the hospital since 2012, but had never seen anything like the Ebola virus. For instance, we were using garbage bags as gloves and personal protective equipment to treat patients on the floor. In the midst of the chaos, we had to provide maternal health services like delivering babies and rendering care without drugs, hospital beds, or supplies.

With no means of transportation for patients in severe conditions, we had to use mini-motorcycles to transport patients on referrals.

After my experience with the deadly Ebola crisis in Liberia where I had to watch my co-workers die as we battled to understand the virus and how to deal with it despite the lack of resources like personal protective equipment and a non-existent healthcare system, I reminded myself of one thing.

If the Ebola crisis taught me anything, it was the fact that we cannot hope and wait for someone from somewhere to come and save us. We can determine our own fate by providing the leadership needed using the tools available to us especially in the health sector.

These experiences are the basis for my passion and life’s commitment. No one should be deprived of life itself due to the lack of basic and affordable healthcare because life is sacred and healthcare is a fundamental human right.

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Yassah Lavelah is a registered nurse and an alumna of the global health delivery master of science program at Harvard Medical School and is currently pursuing a MSW at Temple University in Pennsylvania. She is also a program manager at Bancroft in New Jersey and the founder of Mavee Maternal Empowerment Initiative in Liberia.

A Better World is Possible

By Chelsea Clinton

Paul Farmer made and kept friends across his life and around the world. He was funny (though his jokes weren’t always the barrel of laughs he thought they were). He loved Game of Thrones before it became a hit TV show. He ate too much candy. He liked a good bottle of red wine shared over a table discussing politics, philosophy, his newest science fiction read and our families. He knew what to take seriously and what to let go. Crucially, he never took the present for granted, always believed better was possible and he never had time for anyone who used the status quo as an excuse for inertia.

My relationship with Paul began when I was a student at Stanford after I read his book, Infections and Inequalities, and emailed him out of the blue with my unsolicited thoughts and critiques. To my great surprise and delight, he wrote back, noting which of my points he thought were fair and which he thought were ridiculous, though he used much kinder language and our pen pal relationship began.

I finally met Paul in person in 2002 at the AIDS conference in Barcelona. Later, through the Clinton Foundation’s work with Partners in Health, I had the privilege of seeing up close Paul’s fierce belief that health care is a human right, regardless of geography, wealth, natural disaster, or conflict. I also saw Paul’s deep humility and ethos of centering people in solving their own problems and knowing when to help and when to get out of the way.

Paul was a doctor, an advocate, a scientist and a lifelong teacher. He loved mentoring his students around the globe, and he loved using science and moral appeals to nurture an understanding in Washington, New York, Geneva and other wealthy centers of power that we all need to care about the suffering of the most vulnerable, even when not in a global pandemic. His commitment to teaching didn’t inoculate him from frustration – he was often frustrated, even angry, at the failure of the powerful to understand that investing in health systems that include the historically powerless is indeed in their own self-interest. That anger though didn’t lead to despondency. Paul was always optimistic because he had seen how much Partners in Health and its partners had achieved over the last four decades of radical love and solidarity, expressed through improved public health and medical care.

Paul Farmer never thought of himself as a hero and would probably scoff at anyone who referred to him as such. Paul was and will always be my hero, as well as my colleague, my mentor and my friend. I miss him every day and keep hearing his voice in my head and in my heart, exhorting all of us to always do more and to never give in to despair or cynicism. Powerfully, I know that there are thousands who feel the same call, including at the Clinton Health Access Initiative and across the Clinton Global Initiative Paul Farmer Health Equity Track partners and countless others. Paul’s legacy is in the work he did and the work he will inspire for generations to come.

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Chelsea Clinton, DPhil, MPH, Vice Chair, Clinton Foundation, Vice Chair, Clinton Health Access Initiative. As vice chair of the Clinton Foundation, Chelsea Clinton works alongside the Foundation’s leadership and partners to improve lives and inspire emerging leaders across the United States and around the world. This includes the Foundation’s early child initiative Too Small to Fail, which supports families with the resources they need to promote early brain and language development; and the Clinton Global Initiative University (CGI U), a global program that empowers student leaders to turn their ideas into action. A longtime public health advocate, Chelsea also serves as vice chair of the Clinton Health Access Initiative and uses her platform to increase awareness around issues such as vaccine hesitancy, childhood obesity, and health equity. In addition to her Foundation work, Chelsea teaches at Columbia University’s Mailman School of Public Health and has written several books for young readers, including the #1 New York Times bestseller She Persisted: 13 American Women Who Changed the World. Chelsea holds a Bachelor of Arts from Stanford, a Master of Public Health from Columbia's Mailman School of Public Health, and both a Master of Philosophy and a Doctorate in international relations from Oxford University. She lives with her husband Marc, their children Charlotte, Aidan and Jasper, and dog Soren in New York City.

Health Equity is a Front Line for Social Justice

By Salmaan Keshavjee

Although growing up in Canada seems far from the front lines of the struggle for equitable health care and human rights, I learned there that even in communities striving for equity, huge gaps exist between people who need care and those who receive it. From the health of First Nations Peoples in Canada—who have 300 times the risk of getting the disease tuberculosis (TB) than non-indigenous persons—to addressing health inequity among people who are unhoused, people incarcerated by the state, recent immigrants, groups that have been racialized, and individuals and families living in poverty, I realized that health equity was a “front-line” for social justice, and a critical component of a just society. 

Many of these ideas crystalized for me as a graduate student when I spent a summer working in a poor urban neighborhood of Dhaka, Bangladesh. In the midst of unimaginable poverty, food and water insecurity, and housing precarity—where people were taking shifts sleeping in make-shift settlements—I was part of a team trying to understand why poor women from the community were unable to complete their tasks as unpaid community health workers providing basic health education to other people who were also living in abject poverty. My gut instinct was to ask why, in the midst of such resource-deprivation and hardship, where tangible health care was desperately needed and not being delivered, health education was seen as a bedrock intervention? Was it lack of knowledge that led to people dying from malnutrition, the effects of dirty water, pneumonia, and lack of access to life-saving medicines?  I felt even more nervous asking why vulnerable women were being asked to work for free, when even I, a summer intern, had funding. These questions plagued me throughout my time in Dhaka, and moreover, were not met with much enthusiasm from the colleagues with whom I was working. The persistence of these questions did, however, drive me into the fields of Anthropology and Medicine. Later, after working in Central Asia, these very questions drove me to write Blind Spot, a book aimed at understanding how social and economic forces in the 20th century had constrained our collective ability to provide care to vulnerable populations. 

As I was on this journey of understanding why health care was not being delivered to those in need, in the mid-1990s I had the good fortune of meeting Paul Farmer, Jim Kim, and Ophelia Dahl, and working with Partners In Health (PIH), the global solidarity organization committed to improving health care delivery in areas where there are health equity gaps. Working with PIH has been a balm to my soul because the goal of working in solidarity for health equity has, to put it in Paul Farmer’s eloquent words, offered “the privilege of reasserting our humanity. . . . Against a tide of utilitarian opinion and worse, we are offered the chance to insist, This is not how it should be done.” 

With PIH, we started working to improve TB care in Peru, Russia, and Lesotho — work with which I have been engaged over the past 20+ years.  Without a doubt, TB is a disease with a complex biology, but one that has been largely curable since 1948. The tools to drive down TB rates exist — they have been used in the US, Canada, and other wealthier settings, but have yet to be deployed fully in the rest of the world where TB rates remain high. The result: TB remains a leading infectious killer in the world, with more than 4,000 people dying every day.

And while it is important to spend time thinking about the bacteria that causes TB and its complex immunological interactions, this disease also forces us to think about inadequate health systems, as well as the role of poor nutrition, sub-standard housing, and air pollution as drivers of disease production and suffering. Fighting TB demands that we examine health and health care among people who are incarcerated, who are unhoused, or who live in overcrowded conditions. It demands that we understand how supply chains work, how drug prices are determined and how medicine itself is a “force of production” in the neoliberal economy. Essentially, a disease like TB forces us to think seriously about gradients of power and social processes through which people become sick and, most importantly, the social change required for healing. We are forced to fight against what Paul Farmer called the “the fixing of protocols and policies based on a lower standard of care.”

Knowing that we have tools on hand to ensure that people receive care when they are sick — that we can prevent suffering — is a driver for me in the fight for health care and human rights.  Their deployment will require that we recognize gaps in the way we think about health care and the approach to health care delivery, understand the reasons why they persist, and work in solidarity to fix them.  For me this is one path through which we can repair the world. Paul Farmer once said, “To be horrified by inequality and early death and not have any kind of plan for responding – that would not work for me.” Thanks in large part to Paul, it also does not work for the many people who benefitted from his example of how to act in this world.  Years into this work, I recognize that the struggle for health equity will require the commitment of many. Thanks to Paul’s great efforts and vision, we have an army committed to this work, and a path for what this struggle should look like. 

Rest in Peace, Paul. Your light shines bright. For the rest of us, we have miles to go before we sleep.    

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Salmaan Keshavjee is Professor of Global Health and Social Medicine at Harvard Medical School, and director of the School’s Center for Global Health Delivery. He teaches in the Department of Anthropology at Harvard, serves as physician and Associate Professor of Medicine at Brigham and Women’s Hospital and Senior TB Specialist at Partners In Health, and is Faculty Dean of Adams House at Harvard College. He is the author of Blind Spot: How Neoliberalism Infiltrated Global Health.

To Preferentially Care for Those Made Poor

By Sheila Davis

I was twenty-four years old, from rural Maine, and was naïve to the world and the structural violence that created the have and the have-nots of the world. It was in the 1980s when I started in nursing school and the illness that was soon to be named HIV/AIDS was synonymous with an ugly death sentence. The virus had a devastating impact on the body by attacking and imbedding itself in the host’s immune system, the thing that was supposed to stop its destruction. As horrific as the virus was to people, society was worse.  Although there were those who fought to care for all, there were countless politicians, clinicians, religious leaders, and many others emboldened to blame those who had been infected with the virus as deserving of suffering and treated people as the ultimate enemy — the other.

It was clear early on that health care was not a right. It was afforded to those who were deemed worthy by those in power and the HIV virus had disproportionately impacted those who were already systematically marginalized. Men who had sex with men, those who injected drugs and people who were forced to trade sex for money were the first and hardest hit. The stigma of HIV forced people to lose their jobs, families, and place in society. There were no books about HIV yet, no plethora of peer reviewed journal articles, and no approved treatment for the deadly virus.

Early in my career, I heard of a young doctor named Paul Farmer who had a seemingly radical approach to preferentially caring for those made poor in this world because of structural violence. He and his organization, Partners In Health (PIH), talked about health as a human right and the importance of comprehensive care that included addressing the social and economic rights of people. PIH successfully treated patients in rural Haiti with the new HIV medications and provided food, water, transportation and education for the patients and their families. 

My patients also taught me this important lesson. Christine was expected to take 14 pills a day, suffer with almost constant diarrhea and keep her job working as a parking lot attendant with no regular access to a bathroom. Glen, severely immune compromised, was unhoused and his only option to sleep inside came in the form of fighting for one of the dozens of cots in a room with no air flow or adequate hygiene. Susan was kicked out of her apartment with three young children because her diagnosis was disclosed and she was in danger of losing custody. The HIV virus was not their biggest challenge. Their biggest challenge was basic survival.  

During the 1980’s, the foundation for the movement for global health equity was laid by Dr. Paul Farmer and radicalization of the young nurse from rural Maine began. I bore witness to the power of activism, the importance of the commitment to follow emerging science and the essential safety net that a community can provide to reduce suffering. The tenets of accompaniment and pragmatic solidarity influenced how I saw the world and the fight for health as a human right became the focus of my 35 plus years as a nurse. I had the honor and privilege to work closely with Dr. Paul Farmer until his sudden and tragic passing in February of 2022.

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Dr. Sheila Davis is the Chief Executive Officer of Partners In Health (PIH), a global health non-profit organization rooted in social justice that brings the benefits of modern medical science to impoverished communities in 11 countries. She received her BSN degree from Northeastern University as well as her Masters in Nursing as an Adult Nurse Practitioner and her Doctorate in Nursing Practice with a concentration in global health from the Massachusetts General Hospital (MGH) Institute of Health Professions. She was a clinician in the Infectious Diseases clinic at MGH and an HIV/AIDS activist for over 15 years and for the past decade has held multiple cross-site roles at Partners In Health, including Chief of the Ebola Response, Chief of Clinical Operations, and Chief Nursing Officer. Dr. Davis is a frequent national speaker on global health and clinical topics including HIV/AIDS, the Ebola epidemic, leadership in public health, and the role of nursing in human rights.

A Tribute to Paul Farmer

By Jason Silverstein

On February 21, 2022, Paul Farmer died in his sleep in Rwanda, after teaching students at the University of Global Health Equity.

He believed in healthcare as a human right.

He devoted his life to patients, prisoners, and students. He fought to give healthcare to everyone who needs it simply because they are human, too. He worked with many others on this mission.

We present some of their tributes.

Bailor Barrie, “Think Ambitiously on Behalf of the Poor”

Chelsea Clinton, “A Better World Is Possible”

Brian Concannon, “Why Are You Spending So Much Time on a Dead White Guy?”

Sheila Davis, “To Preferentially Care for Those Made Poor”

Gregg Gonsalves, “Don’t Mourn. Organize”

Mark Harrington, “The Struggle of Many Lifetimes”

Salmaan Keshavjee, “Health Equity is a Front Line for Social Justice”

Yassah Lavelah, “Life is Sacred and Healthcare is a Human Right”

Joselyne Nzisabira, “When They Need Clothes, Clothe Them”

The Danger of Discharging Patients to the Streets

Winters are particularly deadly for people experiencing homelessness. Hospitals are not the refuges they can be.

By Michelle Munyikwa

Image by Esther Moon.

“Where are you staying right now, sir?” I asked the man in front of me. He was leaning against the wall, one leg propped up on the hospital stretcher, one of many lining the hallways of our emergency department. I suspected that he was between houses, judging by the state of his clothes. Based on his chart, I knew he had been to several other emergency departments that week. 

“Around,” he told me, both of us knowing it wouldn’t make a difference if he said what we both knew. As had happened each day that week, he would undergo a brief evaluation and be sent out into the street to find a place to sleep.

This winter, like every other which has preceded it, will leave healthcare workers in the difficult position of discharging some patients who have nowhere to go.

While exposure to the elements is a year round problem, winters are particularly deadly for people experiencing homelessness. As temperatures across the United States drop, the risks of exposure increase for the over half a million Americans who find themselves without shelter. At least 20 people experiencing homelessness die each day in the United States, but incomplete data sets and research challenges make it hard to know exactly how many people die each year from exposure to the elements. Estimates range from 5800 to upwards of 45,000. Deaths among the homeless have increased each year since 2016, likely a combination of untreated illness (including COVID-19), violence, and an increasingly lethal and unpredictable drug supply resulting in an uptick of overdoses. Extreme weather conditions also shape the death toll each winter. 

How to prevent these deaths is an ongoing debate. Recently, New York City leadership has announced a plan to address this problem with the involuntary hospitalization of people with mental illness that struggle with housing. While this plan has flaws, the announcement and the conversation surrounding it have highlighted the role of hospitals, as institutions of care, in preventing the worst outcomes for those without shelter. 

This winter, like every other which has preceded it, will leave healthcare workers in the difficult position of discharging some patients who have nowhere to go. While the law mandates that hospitals discharge patients to a place where they can access shelter and resources, for many patients that means a plan to go to a local housing agency, with no guarantees about when or how they will receive stable housing. Still others leave with a plan to obtain tenuous, temporary housing with family or friends, unsure of how long it will be until they overstay their welcome. Coupled with an ongoing housing crisis, the crunch on American hospitals means that this will likely be the worst winter in recent memory for those experiencing homelessness and housing instability. 

Discharges to the street occur commonly in the Emergency Department, as people experiencing homelessness come in for concerns that are not strictly emergent, often seeking a warm and safe place to rest. Emergency providers I spoke with told me that with rising ED volumes, wait times, and increasing pressure to move patients quickly, unofficial practices of allowing overnight shelter in a room with a turkey sandwich and a blanket have given way to keeping patients in hallway beds or uncomfortable chairs. Once patients are admitted to the hospital, conditions within the hospital, including intermittent bed shortage, cause pressure to discharge patients as soon as possible. 

However, in emergency departments, increased use of “fast track” sections, hallway beds, and uncomfortable situations serve almost as a deterrent for desperate people who might otherwise have a chance to sleep in a bed for a night. Intermittent waves of COVID seem to have shifted the culture around care for those experiencing homelessness. Provider discretion can, at times, lead to admission for patients who in theory could recover at home but require shelter for optimum recovery. Even once admitted, there are no guarantees that patients will be able to stay in the hospital until their precarious housing situations improve. 

Outside of the hospital, an ongoing housing crisis threatens to make this situation worse. Many cities are seeing previously accessible affordable housing purchased and repurposed for luxury housing or other commercial purposes. In Philadelphia, where I work as a resident physician, the end of several housing subsidies threatens to eliminate even more of the city’s dwindling housing stock, leaving many families facing housing precarity as the winter looms ahead.

Ultimately, I discharged my patient from the emergency department that day. He didn’t meet admission criteria, even though I knew he would likely not improve while out of the hospital. Every provider I’ve spoken to has told me at least one similar story: they were conflicted about having to send someone out into the cold, knowing they had no place to go. Sometimes, they told me, they were able to work the system to help shelter their patients in the hospital, but more often than not, they found themselves handing discharge papers to someone who would spend the rest of the night seeking somewhere warm. 

Housing is health care. It is thus imperative that as providers of health care, we attend to the foundational importance of stable shelter in the lives of our patients. Health systems have an important role to play in addressing the needs of people experiencing homelessness in their communities. While this obligation is often framed within the lens of cost-cutting for the overall health system, there is also an ethical obligation to the community, especially given the role of many health systems in increasing real estate costs in their local areas. 

Both insurers and health systems have considered entering local housing markets in settings where affordable housing poses challenges for their patient populations. While this could be lauded as admirable, it is hard to applaud health systems for stepping in to solve problems which they have generated, and there are many problems with their involvement in these local markets. It is hard not to imagine that further entrenchment of health systems in their local real estate markets would not have disastrous unintended consequences. 

That being said, the status quo is not enough. If nothing else, the early days of the COVID-19 pandemic showed that it is possible to produce shelter. Many cities developed temporary COVID hotels and shelters, where people with cases too mild for hospitalization but without a safe place to quarantine would stay. These shelters were plagued with problems, but they did offer some respite, and they most importantly demonstrate the capacity to address this problem. 

At the very least, we need increased funding for social workers and case managers, who facilitate the safe placement of patients after hospitalization or discharge from the emergency department, and who are sorely overworked and underpaid in our current healthcare system. Others advocate for further embedding housing and other resources within healthcare systems, making hospitals one-stop shops for accessing both clinical and social services. Most importantly, we must address the root causes and push for health systems to participate in generating affordable housing and well-resourced communities, in part by paying taxes to their local communities and paying all of their employees a living wage.

Ultimately, health systems should be integral institutions of care in our communities. They could and should be a respite from the storm, not the force which casts people out into it. 

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Michelle Munyikwa is a resident physician in combined internal medicine and pediatrics at the Hospital of the University of Pennsylvania and Children's Hospital of Pennsylvania. Follow her on twitter at @mrmunyikwa.

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