In the Aftermath of Trumpcare



Content warnings:  1) Health/care/insurance  2) Long 3) Mostly facts plus some opinions which are my own and not my employer’s.

In the past 48 hours I have been visited, called and messaged by numerous friends, family and colleagues to discuss not only an autopsy of the Trumpcare debacle but also, encouragingly,  a desire to understand the complexity and  explore ideas on a way forward for our country.  One thing is for sure – improving the health of America will not happen through sound bites from anyone, even accurate ones.  Critical thinking and honest dialogue are our only hopes.  Furthermore, we all come at this complicated topic from the lens of our own life experience and values.   My own career context includes studying the science behind population health, the great privilege of providing hands-on care to all ages as a family physician (and teaching others), helping to steer and operate non-profit community health systems from both a business and clinical view, working either across the fence from or side by side with or inside the walls of those purchasing and paying for health care, developing and selling technology aimed at enabling it, and now leading an organization designed to get more value out of it.  Less known to others are my experiences as a mother, wife, and daughter in a family who has consumed hundreds of thousands of dollars of (mostly) someone else’s money in three very different situations in the past ten years, with the only commonality that they were all indisputably unpreventable (at least not due to “bad choices”) and life-saving – so thank you for that.  We are also a highly non-average household as healthcare consumers – with several Ivy League degrees including two MDs and a JD, a buffer of high income, and very privileged never in the past half century having to decide between purchasing health insurance at full cost or being uninsured (relying on large employers, including ironically hospitals and the Federal Government, plus Medicare).   My views are also guided by religious values of social justice, interconnectedness, and the inherent worth and dignity of all.

The American health system has many virtues – I have three loved ones alive to attest to that – but is held together behind the scenes by good people and an astounding array of band-aids and workarounds caused by inequity, holdovers of history, and layers of entrenched interests (aka the medical-industrial complex). Throwing it all out and starting from a blank slate is not a realistic option, but as we have now seen, neither is an attempt to devise/improve solutions or debate the role of government versus markets versus individual responsibility without stepping back to talk honestly about principles and problems, so here’s my starting point to assist your conversations:

1.     What is health?  It is not the same as healthcare (though accessing high quality preventive, chronic, and acute services can improve health) which is not the same as health insurance (though having that can help access and pay for care).  Health can be defined as not only the absence of disease but also multidimensional well-being.  We tend to measure health in terms of length (e.g. life expectancy, infant mortality) and quality (e.g. burden of disease and disability).  The U.S. spends (from all sources, not just government) a lot more on healthcare than all other developed nations, with the worst health status.  But we also spend a lot less on other things which influence health, such as education, food, environment, social supports to the poor, etc.  So we’ve effectively substituted one kind of spending for the other, without as good an outcome.   What’s more, we don’t always agree on what is “in scope” of healthcare itself and, especially when potentially subsidized by someone else (see Section 5 “Cost Shift Reality Check” below), things get emotional

2.     Is healthcare something that society should provide at some basic level to all (a.k.a. a right), as we do with varying degrees of success for national defense, lower education, and other infrastructure?   If your answer is no, then let me describe my recent travel in a country where healthcare is not a right (and they spend 2% of their already small GDP on it, as opposed to our nearly 20%).   Health insurance does not exist. Publicly operated healthcare barely exists. For almost everything, you pay out of pocket (generally up front).  That is assuming it is even available -- since it is nearly all driven by ability to pay, which most people don’t have (no different here as explained below), there is accordingly little capacity or infrastructure.    In the US we do provide acute emergency care as our default definition of “basic” – putting us big step ahead of that other country in which I was called upon to render emergency care to an unfortunate fellow tourist using a stick, an umbrella, torn up clothing, a Tylenol, and a recommendation for an immediate air evacuation if he could get himself to the nearest airport 2 hours away by horse cart, then boat, then traffic-snared road.  If we can agree that basic healthcare is a right, then we have the relatively easier task of figuring out how to define basic, and how to deploy and fund it.  Furthermore we may need to hash out whether it is okay to be able to “buy more” than basic if you can afford to do so (which we also do for education, housing, food, transportation, even roads).

3.     Why do we need health insurance?    Unless your society/government owns and operates the entire healthcare infrastructure for all (a.k.a. socialized medicine), health insurance is a necessary vehicle through which risk is spread between those who aren’t using it and those who are (see Section 6 “Cost Shift Reality #1” for why necessary).  Insurance is now also the intermediary of the business transaction itself between the consumer and the supplier, negotiating the price through network contracts and paying the bill that is leftover after the consumer pays their share that is set by the benefit design (the copay, deductible, etc).  Large employers and other large purchasers such as the Medicare program don’t need the risk spread part and just pay a health plan or other intermediary to handle the transactional administration.   We have an employment-based health insurance system for those under 65 as a fluke of history, and it has caused many unintended consequences.  Under privatized Medicare, the government does shift the risk to the insurance company, under the sometimes correct view that this gives a market incentive for more efficient use of the funds (the insurer gets to keep what is left over, or has to shell out extra and eventually go bust if they spend more than they receive).  Universal health insurance means everyone is covered through one plan or another.  A single payer system means that there is only one, for example Medicare-for-all.  A story for another day is the time that I had the luxury of choosing which employer-based health plan to pick out of five options, and with all my degrees and experience (even running one of the plans!) and several hours put to use with mad Excel skills, I ended up unable to make an informed choice.

4.      Why is health insurance so expensive in general?  Because a) without making everyone buy it, it is disproportionately purchased by people who need to use it, b) when used it pays for expensive healthcare (see Section 8), and c) to stay in business, insurance companies make a profit (makes for snarky sound bites and memes but is dwarfed by the first two).  The Affordable Care Act focused a lot on the first, dabbled in the second, and tried to put some caps on the third.

5.      Cost Shift Reality Check:  The essence of the debate and the vitriol, some obvious but a lot not so obvious:

a.       From those who use care to those that do not via insurance risk pools, stagnant wages, and other lost opportunities;
b.       From the poor to the rich, old to the young, the non-employed to the employed, and veterans to non-veterans via tax-funded programs like deductions, subsidies, Medicare, Medicaid, the VA;
c.        From those insured through their current work to consumers via the price of goods and services;
d.       From those who picked the “right” health plan for themselves to those who did not, via good timing, luck, and maybe smarts
e.        From employers offering low wages and no or unaffordable insurance to taxpayers via their workers who qualify for Medicaid;
f.        From employers to employees via decreasing the percent of the insurance cost which is subsidized
g.        From government employees to taxpayers via generally generous work-based insurance;
h.       From the uninsured to the insured via providers charging more in order to cover free care;
i.         From the insured in plans that pay providers less to those in those in plans who pay providers more (since it costs the provider the same to deliver the service);
j.         From insurers to those purchasing insurance the next year, when losses are incurred or might be incurred due to increasing prices of healthcare itself or the actuaries getting it wrong;
k.       From those who might use a certain service to those who never will, due to (for example) gender or religion or marital or parenthood status;
l.         From our present to our future, via lack of prevention, pent up demand, and festering conditions becoming life threatening.
m.     Others that I don’t know or forgot!    

Yes, it is complicated!   Before you get up in arms about paying for someone else’s healthcare, you’d better know who is paying for yours.  If you are a business owner who pays for health insurance you might want to consider the unfairness of your paying for your own employees’ healthcare plus everyone else’s via one or the other of the above, and maybe advocating for a universal, tax-supported solution is not so bad.

6.     Cost Shift Reality #1:  Why do we shift/spread so much cost from the sick to the healthy, making insurance feel so unaffordable to the healthy?  (Note, we can debate elsewhere what it means to “feel unaffordable”, ultimately we all make personal choices about how much of our income after taxes we have to or want to spend on everything else and what is essential versus discretionary.  Also, if insurance does not feel unaffordable to you, you are most likely benefitting from somebody else subsidizing most of it, or you are really, really, rich – since the real cost of insuring a family of 4 is around $25,000 per year). 

What we expect from our health care system in the US is expensive and if you need to really use it, it is completely out of reach even for a millionaire – even if we get all the other cost drivers fixed (see Section 8).  That is, if you expect cancer treatment, surgery of any kind, intensive care, 24/7 nursing care, chronic medication, having a baby in a hospital.   If you want people to be able to live off the health insurance grid and they are healthy or even with a common chronic condition like high blood pressure, they will probably get by paying out of pocket for a few office visits, a flu shot, and some $4 per month generic medications.  Or, more likely, they will skip whatever isn’t immediately painful.  The cancer screenings are going start hurting the pocketbook, and without the tens or hundreds of thousands of dollars to pay for early treatment if something is found, maybe best to skip those.   Maybe they will luck out and their stroke or advanced breast cancer won’t happen until they turn the magical age of 65 and become insured by taxpayers (Medicare).  Maybe they will take personal responsibility and eat right, exercise, wear their seat belt, not smoke and luck out on having good genes and nothing randomly bad happen.   Unfortunately, though, bad things do happen to even well-behaved people before age 65.  In this country we do end up providing emergency hospital care for “free” as charity care or bad debt (i.e. someone else is paying for it through tax exemption and cost shift to the privately insured), or bankrupting people for the parts that are not available for “free” (i.e. most doctor’s bills, medications, nursing homes, etc) until we put them on taxpayer funded insurance for the poor. 
 
7.     Cost Shift Reality #2:  Why do we shift cost from those with resources to those without (i.e. the wealthy to the poor – regardless of health status) – refer to Section 2, “Is Healthcare a Right”.

8.     Why is healthcare so expensive, and what can be done about it?  Which brings us to the most challenging Cost Shift Reality #3:   If we want to improve the value of the money we spend on healthcare as country, that means we figure out how to drive better health at lower cost (ideal), or at least the same health at lower cost, or better health at the same cost.  The elephant in the room is that all of these require taking income away from someone who will fight that tooth and nail - even in the case of an innovation which improves health at no net gain in cost because it substitutes for someone’s job today.  This is not just about reducing some rich executive or doctor’s income, it will take away jobs altogether, including a lot of middle class and service jobs, in some cases even shut down the only reliable large employer in a community. The challenge of the Affordable Care Act is that it focused primarily on achieving better health by adding more users (i.e. cost) to the existing system.  In theory, adding more users to the system would create a “backfill” to make up for losses of taking waste out of the system, but that still requires massive changes in the day to day mechanics of how a fifth of the economy operates, and it won’t be undertaken at that scale either voluntarily or easily.

a.       We are privileged to have in our medical toolkit here in the US and other developed nations some really impressive (and increasingly mind-blowing) technology and tools that can do amazing things and extend / improve our lives in good ways.  This is great!  But even so, at some point it there is not enough money in the world to pay for it, no matter how beneficial. This is especially true when research and development is funded by private investment which justifiably needs to make money on the successes to make up for the failed attempts, let alone a profit.
b.       Incentives (i.e., flow of money) are not only not tightly linked to value, but sometimes the opposite.  Long story.  A “fee for service” system which rewards doing more, even doing it badly (because then more can be done).  Lots of hospital and specialty care infrastructure (because that’s where the money is), and low primary care infrastructure despite the latter being directly proportionate to health.   (About 4% of our healthcare dollars in the US go to primary care).  We can all agree in principle that someone with one year of training (and tuition expense and foregone income) beyond college who works 40 hours per week should make not make the same annual income as someone with 7 years of training who works 60 hours per week who should not make the same as one with 11 years of training who works 80 hours per week.  But currently the market pays sometimes about the same for the first and second, and a 20 fold difference between the second and third.   Consumers are shielded from actual cost or often even relative cost of what they consume (because of insurance).  Prices are negotiated through market and/or marketing power, versus actual value to the consumer or cost of production.  Good health status being an insufficient incentive in and of itself to result in perfect behavior on the part of human beings, especially with counterincentives all around, and direct financial consequences mitigated through cost shift.   The profit chain – and remember this accounts for a fifth of our economy – before you throw any stones at those looking to make money off healthcare, consider this includes the investments in your pension fund and mutual funds that likely hold stock in insurers, pharma, biotech, and for-profit providers.
c.        Supply creates demand, unlike a free market.  We (even with completely good intent, which is usually the case) provide services that people do not benefit from or want, sometimes even things that have been proven to cause harm.  We also allow this to happen with less good intent, through marketing.
d.       The stakes are high (including life vs. death), and we have not figured out a fair way to compensate and differentiate those who are harmed through someone else’s gross negligence/incompetence (and to provide a strong financial disincentive for doing that, in case a moral incentive was insufficient), versus harm from a complicated system that has holes in it, versus harm from known risks.  And (back to incentives) there are some powerful people who make money (sometimes a lot) from the status quo.

The Path Forward, including going on record with my personal opinions
 
1. We must  have an informed debate about whether healthcare should be a right in this country (my opinion = yes).  Then the next debate is how much of the economy are we willing to devote to it. At least we can say “less than now”, “same as now”, or “more than now”.  Achieving either less or same spend will require tough choices with consequences, given the addition of new consumers and aging consumers, plus advancing technology.  
2.   We need to find some better balance points in the inevitable cost shifts, because they are not working fairly as is.
3.       Phase change in over time – you cannot disrupt a fifth of the economy without unintended consequences.  This is particularly true for simply altering incentives (relatively easy with political fortitude) without addressing the need for deep changes in how care is delivered (slow and difficult to accomplish, old habits are hard to break even when self destructive).  Eventually incentive change in isolation would drive care model change through market forces, but only after knocking a lot of barely-getting-by yet critical providers out of business.
4.       Find the lowest hanging fruit of the most obvious “right things to do” regardless of political philosophy and rally people behind them both voluntarily and probably some involuntarily.  For example, don’t provide “care” that recipients don’t want (for example, aggressive and even futile interventions when death is imminent and the person really wishes to die at home with minimal suffering).  That requires everyone to determine their wishes, communicate them, advocate for them, and respect them.    Stop routinely paying for services which cause harm or little to no value to health, especially NEW things (it is harder to take away than not give in the first place).  This sounds like a no brainer but it not always easy to determine where there is an individual situation where there is benefit, and we have a “more must be better” mentality as consumers and demonize anyone who makes the "no pay" decision as rationing (even if provides no benefit or harm).   On the flip side, do as much as possible to make primary care as accessible as possible, including capacity, convenience, cost, and scope.  This also requires expanding the definition of primary care from the face to face, 1:1 visit to a team-based, technology enabled relationship that is customized to your needs.
5.       There are some things in healthcare which are priced (and paid) at astronomical amounts that are just completely unjustifiable by any argument other than “we have figured out how to get away with it”.  Don’t let them get away with it.   This will require taking away some free passes (such as not letting the largest purchaser of healthcare, i.e., the government, even negotiate price of drugs) and looking hard at a variety of other laws which actually perpetuate price-gouging.
6.      Eventually we are going to have to bite some bullets on the idea that the free market really works for something that we treat as a right, where supply can create its own demand as opposed to need/want, where a lot of important things are necessarily REALLY expensive and thus cost shifted to non-consumers, where competition can increase cost through complexity and redundancy, and where the stakes are life and death.   This does not mean rationing and socialized medicine (which, by the way, is how we handle education).   It does not even mean a single payer system, though that would accomplish much of the same and more with one highly disruptive move (hint, maybe my opinion and one that is shared by a lot more of my colleagues than will admit).  It does not mean the end of employer-sponsored health insurance (which is a historical fluke that causes us a lot of pain and workarounds, and we should talk seriously about ripping that band-aid off ).  It does not mean the federal government taking away everything from the states, because healthcare is ultimately delivered locally, but I believe the cost shift and value problems impact us mostly across state lines and we need major solutions that apply across the board.  It does mean talking about regulation (including of price, profits, and marketing) and less freedom for healthcare consumers to do/have anything they want yet still be insulated from the cost of their choices.
6.   Those of you who know me won't be surprised that much of the above was the actual intent of the Affordable Care Act, aka Obamacare, and now we can get to work on making it work better.

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