Some thoughts on health injustice in America
Hello friends,
This one's long. It’s been a minute since I got to last speak with you. Since then, I’ve been on the road. I drove around the East Coast and Midwest and spoke with 28 groups of people about single-payer, health justice, and what healthcare (and health injustice) looks like in their communities. (I’m starting the slow process of putting together more trips—if you are a person who organizes events and you’re interested in hanging out, let me know). Here is a more-or-less transcript of the prepared portion of the speech, if you want to read it. It's better in person.
It was dope! It was also really fucking heavy. I’m going to try to use this newsletter to talk about some things I learned and saw, some thoughts on a worldview I am chewing on, a quick note about the revolution of single-payer, and then some updates on projects I’ve been working on.
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THOUGHTS FROM THE ROAD
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THE BODYHORROR OF HEALTH INJUSTICE
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SINGLE-PAYER AND “THE REVOLUTION”
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OTHER STUFF
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THOUGHTS FROM THE ROAD
I got to talk with a few thousand people over the past couple of months. To be frank, I’m still chewing on what I saw and what I learned, and I probably will be for a while. Here is an incomplete portrait of health injustice in America.
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In Pittsburgh, PA, the University of Pittsburgh Medical Center is the largest healthcare provider, largest employer, and major insurer (2.5 million customers and $5b in revenue in FY2015). Surprisingly, giving a corporation total dominion over a community hasn’t resulted in good health outcomes or a just healthcare landscape. UPMC pulls in almost $400 billion a year in operating profit—led by its insurance product and aggressively opening new hospitals across the county, which get to charge expensive inpatient rates—yet wields its not-for-profit status to avoid paying taxes—even going so far as claiming it has no direct employees to get out of employment tax. I learned that it hasn’t paid its water bill in over 25 years, because the state can’t shut down the utilities of a hospital.
And what does UPMC do with all this money? Open a food bank for the employees it refuses to pay enough to afford food. -
In Marquette, MI—a beautiful town in the Upper Peninsula of about 20,000 people when school’s in session—nurses took to the picket line. For the past few decades, we’ve seen in Marquette what we’ve seen across the country. Community health centers are shut down, primary care centers are shut down or rolled into hospitals—because primary care is a time-intensive low-margin activity, and hospital admissions make money. Now one hospital services a large rural area. This hospital is owned by Lifepoint, a $6b chain based in Tennessee. Lifepoint has squeezed the Marquette area to a breaking point—nurses were working 16-hour shifts with no contract. When nurses went on strike, the whole town showed up (and a DSA chapter was formed).
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In Chicago, trauma centers have been shut down. The county jail is America’s largest provider of mental health services. In St. Louis, police murder people with no consequence (and then charge the city millions of dollars to police the protests against them), all the homeless shelters have been shut down, and slumlords rule the streets. In Louisville, 90% of the black population lives in a food desert while the city builds a minor-league soccer stadium. Shit’s rough out there.
I’m 29 years old and it’s 2017, so of course I have friends who have died in the opioid epidemic—it is more unusual to hear a friend has purchased a home than to hear someone has OD’d. I understand the opioid epidemic, vaguely and abstractly; I understand it is the result of a manufactured and marketed effort to invent a new disease and its cure; that it is the primary innovation of the pharmaceutical industry of the past thirty years; that its criminalization—just like what happened with crack, but without the hateful fuel of outright racism—frames the problem as one of crime instead of health; that we face a $183 billion price tag just to try to stabilize the plague. But it is overwhelming to confront it every day a few hundred miles apart; to hear the same stories—that someone was just out of rehab; that insurance cut them off from a full course of treatment; that someone had just lost a friend; that someone had lost five friends just this year—in every city I visited. That people felt comfortable coming to me and telling me their stories; that they shared with me a vision of the better world; is an honor. But it was in Indianapolis that I cried.
Indiana is home to Scott County, which you might know as one of the few places in the US with a new population-wide epidemic of HIV/AIDS.
We understand the causes:
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One, pharma companies have recently pushed “tamper-resistant” pills to market, which can’t be crushed and snorted. This doesn’t do anything to curtail abuse and addiction but it does let a pharma company claim to take opioid addiction Very Seriously while renewing the patent for its cash-crop (similar to how Purdue created OxyContin and its marketing campaign when its patent on MSContin was set to expire). If you’re a person battling addiction, not being able to snort an opioid doesn’t keep you from abusing it. You just dissolve it in water and inject it (or turn to heroin or fentanyl instead).
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Two, then-governor Mike Pence shut down needle exchange programs in the state. Needle drugs are for criminals, we understand. Why should we spend money on criminals’ healthcare?
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Three, the state of Indiana gutted or shut down federally qualified health centers, Medicaid community clinics, and places like Planned Parenthood.
If you’re a person battling opioid addiction, you’ve gotta turn to needles, and now there aren’t any clean needles available, and there’s no place to get help. The results are infuriating in their grotesque predictability; more people get HIV/AIDS and hep C.
That’s not where the story ends. We work hard to dehumanize people battling addiction; to deny them the basic decency of personal agency and context. But they have families; they have communities. I spoke with a friendly young man who worked in the school system in Scott County. The county is now home to a necropolity—a bunch of people denied their humanity; rendered non-people, floating in and out of the system. Indiana has a robust school voucher program, and families with means who didn’t want their kids to attend school with the children of the necropolity sent their kids—and their tax dollars—elsewhere.
So the Scott County school districts have disproportionately more kids with someone at home in the system, and with the school choice programs and Indiana’s property tax cap, they have less and less money to spend (in 2015 they had to cut $1.3 million from their budget). That’s fewer teachers, less food, and no mental health or guidance programs. The man I spoke with said you could spot a kid going through hell from a mile away—a kid with a parent in the system, a child of the necropolity; yet there was nothing they could do to help. And so Scott County saw an increase in child suicides in school.
I'm so mad and so heartbroken. This is the cost of the war foisted upon us. American capitalism—American healthcare—is a heinous machine that turns bodies into profit, and then into blood. This heinous machine can no longer be tolerated. We fight for restorative justice today, so that tomorrow we may have a shot at health equity. And I believe that we will win, because we must.
II. THE BODYHORROR OF HEALTH INJUSTICE
Something that’s really rubbed me raw recently is the nomination of Alex Azar, of pharma megacorp Eli Lilly, to HHS.
I’ve referred to type 2 diabetes as the ‘perfect disease’ of neoliberalism before, and while that’s a little cute, I mean it. It’s a disease often abetted by lack of access to healthy food (and the time, space, and materials with which to prepare it). This lack of access is a sin of commission, not omission—it’s simply not profitable to sell poor people vegetables. Poor people, corralled into food deserts by racist and classist housing policies, grow sick from diets heavy in, for example, high fructose corn syrup (so heavily subsidized in America); many of them get diabetes and comorbidities like cardiac failure. This is what drives healthcare costs in America. (and the answer, I reckon, is a federal single-payer that recognizes food as healthcare. Until then, we just have to hope that Medicare keeps finding ways to pay for extra-clinical healthcare)
About a tenth of people in America have diabetes. Insulin costs half their income. I met a young man who has to barter for insulin on Facebook, because his insurer won’t cover the kind he needs.
Behind this cost increase is Eli Lilly and other insulin producers, who appear to have a cartel-like agreement to fix insulin prices and raise them cooperatively. The result is a tripling of insulin prices over the past decade. This piece in the Nation does a good job explaining the consequences.
It gets worse, naturally. We have inherited a world in which the bodies of poor people are all but mined for profit, then discarded when they cease being useful. It is not profitable to provide a sick person insurance, or a poor person healthcare—so instead, we use them as oil fields, ready to exploit.
In the 90s Lilly was busted for using homeless people in Indianapolis as "guinea pigs" for Stage 1 pharma trials (here’s an excellent investigative essay from more recently and a zine made by test subjects in the early aughts). Uninsured people are twenty times more likely to donate a liver or kidney than receive one. It's tacky, but it's as if we live in the Matrix—our bodies are literally harvested to fuel the ruling class.
In life, poor and uninsured people test the drugs sold to insured people. In death, their organs are ripped and sold to wealthy people as transplants. There is no end to the barbarism of capitalism; there is no line too far for the commodification of the body
III. SINGLE-PAYER AND “THE REVOLUTION”
Single-payer is not the revolution—it is our first counterattack in the war already waged against us, by which the subsequent counterattacks are made possible. It is a relatively benign transformation which begets the broader revolution.
But single-payer is not the goal, either. It is a tool. Once you force the federal payer to bear the costs of providing care and the risks and costs of not providing care, you open the door to questions of—well, why do people have to live in slums, anyway? Why can nobody afford to practice rural medicine? Why is the prison state so expansive, and so expensive, to begin with? Why, if the course of our life is determined by the arbitrary whims of genes and geography, is it just to force someone to suffer because they were born wrong?
The movement which organizes around health justice is the movement which can force this broader reckoning. I believe I may not see the revolution in my lifetime, but I feel an obligation to help articulate the vocabulary by which future generations might win it. A robust single-payer program, demanded by a movement in the unyielding pursuit of health justice, is the tool by which we realize a shared vision of a better world. It will be difficult and slow—I expect PhRMA will begin spending heavily against it as the 2020 election approaches. But it is moral. It is necessary. It is achievable.
IV. OTHER STUFF
On Insurance Labor, Primary Care, and Non-Clinical Healthcare
You know Matthew Lesko? Guy on TV in the early 90s, wore a big Riddler suit. Had a bunch of public access TV commercials about how the government owes you money; how you are entitled to free money from the government. That's the model for primary care that we are forced to explore under single-payer.
Let me give you some examples or some context.
Ever hear of medical-legal partnerships? They're a form of primary care that started in Boston. Basically, you and me and everyone have civil and legal protections to which we're entitled that affect our health. Except the think about civil protections is, you gotta have the forms to fill out, and that means you gotta both know where the forms are, and have time to do them. And if you're working 60 hours a week, or you're poor, or you're busy, maybe you don't have that kind of access.
So a medical-legal partnership, which as far as I'm aware is often paid for by Medicaid, treats civil protections of the social determinants of health as a peer to clinical care. Here's how that shakes out: a person walks in, and says, "hey, my kid has real bad asthma; my kid is 3 years old, this is too young for asthma this bad." The person who intakes them -- the case manager -- does the intake, says, oh, you need this kind of clinical are, and sets them up with the clinical care they need.
But that case manager is an advocate for the patient, and understands that their goal is to take care of the patient's whole health. They ask, well, sometimes asthma is caused by home conditions; what's your home like? The patient says, well, i'm poor. I live in a slum in Boston. My apartment is full of mold or pollution and there's nothing I can do about it. So the case manager runs over to the law office one door down in the clinic, and a lawyer comes over with a form letter for the patient, threatening to sue the slumlord to bring the apartment up to code. And it works!
That's the role of insurance labor under single-payer. We understand that letting folks live in slums causes more expensive healthcare costs than giving them safe housing to begin with. But people can't always access the protections to which they're entitled. And if you are capable of adjudicating a claim--finding ways the people around you don't deserve or don't warrant a certain kind of care, you can invert that skill; to help people find the ways they are capable of receiving care. Claims adjudication is just the inversion of social work.
So that's the Matthew Lesko model—you turn insurance labor around, and let folks who are paid to restrict access to care instead be the advocates for finding more care for patients, because that drives long-term costs down--and is the right thing to do.
This concept extends to patient advocates in hospitals. We know that the provision of healthcare is racist—part of that is because only the children of doctors can afford to become doctors themselves; medical training must be made free—and we also know that one way to keep doctors "in check" is to push back against them, or encourage them to consider a broader set of options when evaluating a patient. Patients are unable to do this themselves—patients are under duress—but patient advocates who more closely represent the community they serve even the playing field.
On Disability and Disabled Activists
I had the opportunity to hang out with some disabled activists on the roadtrip. It was hype. In short:
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I have not understood (and do not fully understand) the degree to which disabled comrades are marginalized, and
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I will insist that any event I speak at is physically accessible & livestreamed.
Solidarity demands going to where comrades are at and helping out. If this makes it a little easier for members of DSA with disabilities to get involved, then I'm amped about it. It's the least I can do: ADAPT saved all of our gooses when the BCRA and Graham-Cassidy were on the line.
Other Projects
Me and Kelly Jo, the love of my life, continue work on HEAVYxMEDICAL, our podcast about health policy and metal music. It takes us a long time to record episodes because we both work fulltime and do a lot of research. We have another one we're in the middle of recording right now — a combination of the stuff I wrote in this email and research about "institutional betrayal," or how institutions perpetuate "a second rape" when they fail survivors of sexual assault—and what a better model in a more just organization might look like.
We've also signed a book deal with Melville House, and will release a book on health justice next summer. We're looking for a place to hole up for a week or so early next year to work on it. If you have a shed or cabin somewhere we can borrow or rent very cheaply, please let me know.
A few months ago Max Baucus said he thinks single-payer is inevitable. I think he is right. But I do not want the single-payer program Max Baucus designs. I want the single-payer program the movement for health justice demands. I think that's enough for now. I'm proud of you!
Nathan Oliveira, 'Bee's End, from the suite Twelve Intimate Fantasies', 1964