Some thoughts on healthcare injustice, moralism, and suffering

Howdy y’all.

Been a minute. Hope you're doing good.

1. Stuff I written recently
2. Stuff I saw on the road
3. Compassionate labor
4. Moralism and the “undeserving poor”
5. A treat

I. Stuff I wrote recently  
Since we last spoke, I went on the road again and spoke across the South. Here’s a video from one of those talks in Nashville. I come on at 35:00, but I recommend watching PNHP president Dr. Carol Paris before me, too. https://www.pscp.tv/w/1ZkJzdjezWZKv

I also wrote about the United States of Care, that asinine “healthcare over politics” astroturf org headed by a bunch of well-meaning influential people and nihilistic neoconservative barbarians, last month for Splinter. I think it’s a pretty strong piece. Here: https://splinternews.com/the-very-bad-politics-of-putting-healthcare-over-politi-1822806820

I also also wrote about the Berkshire Hathaway/Amazon/JPMorgan Chase healthcare initiative for the Houston Chronicle. Thank you to opinion editor Evan for making it punchier and more accessible. https://www.houstonchronicle.com/opinion/outlook/article/Faust-Don-t-let-Chase-or-Amazon-control-your-12616545.php  

II. Stuff I saw on the road.

I wanted to talk about some stuff I saw on the road.

I have witnessed such suffering. I have sat mumbling in living rooms across America while strangers have given me food and shelter and beer and, after a moment, shared with me in quiet voices stories of the humiliation and pain inflicted upon them by something as simple and stupid as a national healthcare financing model.

Do you fear your body? We are all, as my friend Dave said, made of gross goo we barely understand. It is not death I fear but the knowledge that this goo will, inevitably, betray me. Most of us, the temporarily able-bodied, have been blessed with the permission to forget that fear. But after the fear rises there is no forgetting. Our weakness is centered when the body revolts or begins to decay. In America, we offer two options: healing, the alleviation of the fear; or hunger, the degradation of poverty.

Unless, of course, you’re rich. Wealth is a secondary permission; a meta-blessing—to never have to choose between healing and hunger, and to never have to inflict that choice upon the people you love. The fear comes for us all, but it comes much more gently for those who can pay it off.

I drive around the country learning about suffering and I have nothing to offer in return to but the promise that I would not forget those who suffer; that I would carry them in my heart. Here are some things I have seen.

• I visited Memphis, TN. Memphis is the largest majority-black city in Tennessee and, as such, is often ignored or maligned by state policymakers. It’s a casualty of welfare reform; home to multiple mass purges of welfare rolls and also several radioactive waste dumps (located, conveniently, near the poorest neighborhoods).
  
  The Shelby County health department, which contains Memphis, celebrates that the county’s infant mortality rate is down to 9.3 per thousand births — still more than twice the rate of the entire European Union. This being America, black families are disproportionately made to suffer—black infant mortality was 20 per thousand back in 2003 and, statewide, is twice the white infant rate. Today, black infant mortality is  twice the rate of white infants.
  
  Where do poor babies go where they die? For a long time they went to “Babyland,” a corner of the Shelby County public cemetery—a potters’ field for children. They are put to rest in cramped rows below the earth; in unmarked graves a half-mile a block away from a Wal-Mart.  
  
  Or, at least, they used to be—because in 2014, Babyland started filling up.
  
  Poor black children in Memphis die in such volume that we have run out of room for the corpses.
   
• I met a couple, a husband and wife, in South Carolina. A few years ago, she was rushed to the hospital for an ectopic pregnancy (a common medical emergency in which the body implants a fertile egg incorrectly and a fetus begins to grow outside the uterus). It appears to cost a hospital a few thousand dollars to treat an ectopic pregnancy. Since pricing in healthcare is fully irrational, the cost to insurers is about $25k, while the uninsured are charged higher, unpredictable prices.
  
  The husband worked a few jobs, including at a pizza place, but none that offered insurance. Thanks to federal ACA subsidies, they were able to get a plan with low out-of-pocket premiums. They lived in a nice home in a pretty neighborhood. He even got a raise at the pizza place; another dollar an hour. Things were going well.
  
  Then they weren't. The wife began bleeding. God, how awful—I get a little stressed out when my girlfriend has something as basic as an upset stomach—to feel that excruciating pain (or see your partner endure it). How cruel is God to let us at once understand the devastating certainty that the pregnancy is terminated, but not how or why. But they had done everything right, at least—they were responsible, At least they had insurance.
  
  Except—
  
  That little pizza raise changed the husband’s annual pay. Federal ACA subsidies are adjusted for income, so when someone’s annual income, the federal subsidy must increase or decrease to compensate. The husband had been particularly diligent—more than I would be, for sure—and remembered to report his raise to the IRS. This meant the federal payor would pay less per month to the insurer, who would then bill the husband the difference—a few dollars more a month.
  
  But that didn’t happen. Nobody seems to know why. For some reason, the insurer received less subsidy from the federal payor, did not increase the amount billed to the husband, and then silently terminated the couple’s coverage after a couple months of “nonpayment”.
  
  So while the wife lay on the hospital bed, her world split apart, she was uninsured and nobody knew it.
  
  A few weeks later they got the bills. Massive, unreadable, terrifying documents—you know what they look like. Now they owe the hospital tens of thousands of dollars. A lifetime of debt for want of a few dollars per month—no fault of their own, but with no recourse.
  
  They have a kid now, a cute little guy about a year old. This debt unjustly forced upon them is time they can’t spend together; clothes taken off his back; food taken from his mouth.
   
• Hookworm is a disease endemic to the deepest depths of poverty, one which we thought we had all but eradicated in the US by the 1980s. We were wrong. Hookworm runs rampant through the poor parts of the rural Deep South. In Lowndes County, Alabama — a rural county where a third of the population lives below the poverty line—one in three people among a sample taken in 2017 were found to have hookworm. Hookworm! That’s a rate consistent with (and, in many cases, higher than) than many impoverished countries. This feels like being told that goblins exist—a symptom of the massive disconnect between people who get paid to think about policy and rural populations that are affected by the consequences.
  
  Sewer systems in rural counties—never intended to be stretched as thin as they are now—fall apart, or were constructed inadequately in the first place—and the state can’t (or won’t) approve the substantial funding required to retrofit them. So people make DIY fixes from PVC and sewage builds up in people’s yards.
   
• Hospitals in rural areas tend to serve a population with a much higher uninsurance rate than hospitals in urban areas. This is because we have largely pillaged and stripped all the resources we can from these areas, and now there are few employers available to offer employer-sponsored insurance. So Medicaid is the primary insurer for many rural areas.
  
  But what happens to these hospitals as costs increase but Medicaid isn’t available? Well, they go insolvent and close down. In states that chose not to expand Medicaid under the ACA, the hospital closure rate is six times that of states with Medicaid expansion.
  
  This happened in rural Polk County, in southeastern Tennessee, home of some of the state’s worst health outcomes. Copper Basin Medical Center, under siege from years of mounting debt and declining revenue, was in danger of shutting down. The residents of Polk County took up a collection on GoFundMe for their hospital. Of the $100,000 needed to keep it alive another month, they raised $6,000. The hospital closed. Of course, the nurses who worked there weren’t paid.
  
  Where will the residents of Polk County go now? If they’re lucky, maybe they can get care in another rural hospital half an hour away in Blue Ridge, GA. If they’re not, they’re looking at drives of up to an hour and a half to Chattanooga.
  
  It’s likely there are other, shittier reasons that exacerbate the crisis behind Copper Basin’s closure. They could have overpurchased on expensive equipment or unnecessary data tools, mismanaged their staff, or (likely) focused more on billing-maximization processes to return the most revenue from insured patients at the cost of spending more on care. What a stupid series of problems. What stupid consequences. How cruelly and numbly we treat people in need.

There’s more; there’s always more. The disabled couple in Memphis who committed suicide in front of the Tennessee capitol instead of being forced by the state Medicaid program into separate nursing homes against their will. The millions and millions of people across the country who have been systematically exploited and abused by the opioid epidemic — then thrown into prisons when hospitals don’t want to treat them. The millions more who suffer from chronic pain and whose condition is stigmatized; who are prevented access to the drugs and therapies they need to exist comfortably. My friend who is a personal care assistant for his childhood best friend, who has muscular dystrophy, but who is paid so little that he can’t afford to pay off his own crushing medical debt or move out of his parents’ house.  

It is an act of love and trust to welcome someone like me, a stranger, into one’s vulnerability. I must honor this trust. It is why I do this work. I hope it pays off.  

III. Compassionate labor  

For all the flaws in Medicare’s value-based payment models (and there are many), several of its initiatives are clearly designed from good intentions. One of the ones I like is the penalty for readmission— that is, hospitals that treat Medicare inpatients see their reimbursements decreased if those patients readmitted to inpatient care within a short period of time following their initial hospitalization.

Who keeps people from getting re-admitted to the hospital after surgery for a heart failure? It's not the cardiologist or the heart surgeon. It's the social worker, the nutritionist, the nurse, and the patient advocate; the people who educate, persuade, comfort, and soothe.

I visited a bunch of healthcare clinics in Arkansas, including an FQHC, a new community clinic, a readmission-reducer for heart failure, and a Medicare-reimbursed intensive cardiac rehabilitation facility (really cool comprehensive nutrition/fitness lifestyle social center).  

Evgeny Morozov's technological solutionism applies to healthcare as well: for forty years, more increasingly recently, we've treated healthcare problems as problems only inasmuch as they have technical/technological 'fixes'; the answer to nutrition deficits are Apps that tell you how much you're fucking up or "how to survive on $4 a meal" cookbooks. the answer to ED overutilization is Apps that penalize you for fucking up or give you small cookies for doing good. Clearly this is not the answer: health requires means, time, and social reinforcement. Its cultivation lays outside the realm of any technical fix.  

Thus, unsurprisingly, it is non-diagnostic, extraclinical care—compassionate labor; "feminized" labor—which drives virtually all actual improvements in population health. Social workers; patient advocates; nurses—these are the people chronically unrecognized and undervalued. A federal single-payor interested in improving population health (and reducing the cost impact of its sickest members) is forced to recognize and value these relatively simple, but repetitive & unglamorous, kinds of work.   Nobody is genuinely surprised by this. It does not require some unique genius to realize that a person dies sooner from lack of food or shelter than cancer. Some hospitals, realizing the costs they accrue by treating patients whose (un-reimbursed) utilization is driven by homelessness, have begun subsidizing housing for their most frequent patients. But this is an insufficient solution to me; it represents a passive delegation of responsibility by the state.  

Perhaps through health justice—beginning with single-payer; forcing the state to bear the medical costs of homelessness, for example—can a part of the 'wages for housework' movement; the valuation of uncompensated & undervalued compassionate labor, be realized.  

IV. Moralism and the “undeserving poor”.
This email is already like 3000 words and I’m tired. Writing is very difficult for me — ask me how my book is going (BAD, SLOW, BAD). So I will write this very very briefly.  

The moral question underpinning any question of welfare or health justice is “who deserves this?” I think this question sucks ass. Once we attempt to discern the deserving needy, we immediately imply into existence the idea of the “undeserving” needy.  

The class of “undeserving poor” is ostensibly defined as a group of people who, through their own actions, are unworthy of receiving help—people who are irresponsible, or lazy, or genetically inferior, and whose care thus constitutes a waste of state resources. This is just a cipher for giving credibility to the designation of the socially undesirable and using it to weed them out through the slow devastation of poverty.  

If that sounds like eugenics, it is — early proponents of means-testing in America cited the late-1800s British fucker whose pervert science argued that eugenicism was a responsible ideology of the British state — “because these people are genetically unsalvageable,” the argument went, “spending crowns on helping them is just a waste of money, when that money could be spent on helping people who can be saved.”  

Anyway, now there’s a new crop of 1115 waivers to Medicaid, as expressed below. Prior to the neoconservative reaction to the ACA, Medicaid waivers were generally experimental; intended to let states adjust their care models to cover the quantity of eligible people at less overall cost. Now, waivers are used as ways to abdicate Medicaid responsibility, or starve out “undeserving” populations for reasons of race or income.  

Welfare reform from the 80s through the Clinton era was couched in terms of economic scarcity—”stagflation has happened, but please ignore the cause: in fact, you are suffering because others are ‘getting away’ with free handouts from the government. Therefore, we must force them to earn their benefits, lest the whole nation suffer from spending too much money.”  

You might think (as I thought) that these new 1115s are argued in state houses in economic terms—we cannot afford to fund Medicare, so we must trim the rosters by enforcing work requirements to drive out the “undeserving” poor. It turns out this is not the case. No, the new batch of work-requirement 1115s are being offered in simple moralistic terms: people are mooching in the social safety net, and we must punish them, because Work is Good. The bills are drafted by ALEC or ALEC-likes, and the state officials reach for the easiest possible message to pass it. No economic justification is offered — in fact, the costs of administering these programs are often greater than the “savings” which result.  

Therefore I posit that we must champion single-payer and health justice in moralistic terms. We live in the era of <<Bailamos>>, and nothing is forbidden anymore. If the neoliberal impulse to commodify all human activity and then justify life in market terms has been forgotten by those who championed it in the first place, then why the fuck would we let ourselves cling to their hateful rhetoric? No, let us presume prima facie that the most prosperous nation in the history of nations can afford this simple, just healthcare finance model. Let us champion single-payer because it is moral, because it is necessary, and because it is achievable.  

(There is also a point to be made that the traditional American conception of welfare (or healthcare) argues that it must provide a worse standard of living than even the most brutal, shittiest job — because “working” is better than “not working,” regardless of the quantity or quality of work available. Thus, gutting the safety net gives industry an excuse to make jobs worse — because even their shitty jobs are better than no job at all — and that this ultimately creates a vacuum offering downward pressure for wages and work-quality.)  

V. A treat  
Lastly, a little treat. I cannot over-recommend this brief blog post by Frank Pasquale on punitive neoliberalism and weaponized experimentalism. On the topic of the recent batch of Medicaid 1115 waivers (which are explicitly required to be “experiments”) which let states apply work requirements to Medicaid:  

After speaking on a health law panel at the recent AALS conference, I overheard someone proudly mentioning that their friend had just received a grant to study the rollout of work requirements in Kentucky. The reality-based community rolls on, rigorously quantifying whatever punitive new “innovation” that Red America delivers. On one level, I applaud the social scientists who will soon be chronicling predictable tales of Kafkaesque frustrations. However, I must also raise some questions about the import of such research. If, by some miracle, work requirements manage to scramble some percentage of those who could work, into employment, we shall never stop hearing about the success of this latest version of “welfare reform”—however irrelevant it is likely to become in an era of accelerating automation and persistent export of jobs. Cajoling persons into low-paid work that is likely to disappear soon is a recipe for disenfranchisement. On the other hand, if work requirements fail, will the push for more labor end? I am skeptical. Advocates of punitive programs are rarely, if ever, put off by failure. They simply pivot to say that while the particular program design studied did not work, others can be developed. “Fail fast, fail early,” as Silicon Valley gurus counsel. Indeed, we should expect future partnerships between Medicaid authorities and platform capitalists. Former Obama advisor David Plouffe has already touted the quasi-criminal conspiracy known as Uber as an effort-forcing safety net/work-house. For the neoliberal proponents of work requirements, whatever results emerge from any given study of current programs, there will always be new forms of discipline on the horizon—new ways to shape the body and soul of the Medicaid subject to render her or him more functional for an economic system premised on ever-cheapening labor costs. As long as it’s other people’s bodies on the line, endless rounds of trial and error are acceptable as a mode of policymaking. Social scientists should also consider the possibility that the proponents of work requirements or wellness programs have no interest at all in their effectiveness. Consider, for instance, the evergreen initiative to drug test welfare beneficiaries. Has it ever proven cost-effective? And what about reports that the IRS recently spent $20 million to have private debt collectors recover just $6 million in taxes, and that “45% of the collections by private contractors were from taxpayers whose incomes fell below the minimum threshold, including those who received Social Security disability payments”? In each of these cases, neither helping beneficiaries, nor protecting government resources, seems adequate explanation (or justification) for agency practices. Indeed, no one should be surprised if the new Medicaid initiatives actually cost the government more money than they bring in. Work requirements will disrupt preventive care for many recipients (and many of their extant caregiving duties), resulting in rapid intensification of medical problems, and exceptionally expensive visits to the emergency room. Through the cost-shift hydraulic, that money will eventually be recovered via taxation or private health insurance premiums. Like Trump’s infamous decision to abandon cost-sharing reduction (CSR) payments, the work requirements will likely amount to a trifecta of waste: higher costs for government, worse health outcomes for individuals, and even more intense bureaucratic rigmarole for all involved.

Well, that’s all. Thank you. If you live in Austin, please come to my wrestling show this weekend. If you are visiting Austin for SXSW, you are also welcome. Just please don’t move to Austin afterward.

Also, this brief profile of me was written in the Texas Observer. It makes me anxious how nice it is. I have been blessed with the chance to learn about so much suffering and shout it into the listening sky. I hope I can earn what I have been given.

Also also, my partner and I are moving to Boston this fall for a year. I will need to find a job. I would prefer to find one which lets me read health policy in my downtime (or even as part of the work), but also pays for me to be "good at computer". If you have this job, please let me know.