A Tale of Two Health Systems

The U.S. healthcare system, it must be admitted, is pretty good at some things.  If, for example, you have a heart attack, need an organ transplant, or want to undergo the latest cancer treatments, it's hard to do much better than in our system (aside from the pesky problem of paying for that care).

Otherwise, not so much. 

If you are in generally good health with only intermittent interactions with the healthcare system, you probably view those encounters with both reluctance and some frustration.  If you have chronic health issues, you are forced to regularly navigate the byzantine maze that our healthcare system has become; either you learn to muddle your way through, or you die trying. 

We have a one-size-fits-all healthcare system that, unfortunately, doesn't fit most of us.

The facts are well known but not well appreciated, at least not in terms of the "design" of our healthcare system.  As illustrated in the chart below, a small percentage of people account for most of our healthcare spending.  Most of us contribute very little to the nation's health spending.

So where is the healthcare system that focuses on the top 10%?  And how is it any different from the system for everyone else?

It's not, and that's the problem.

People in the top 10% need help.  They need experts who can help them navigate that byzantine maze.  Many health plans have "care managers" who are supposed to be those experts, as do many hospitals and some physician practices.  But usually these are telephone-based, only touch base periodically, and have lots of other people on their rosters. 

Few of them would be at your side if you had a health crisis, especially at night or on the weekend.  Few of them would know in real-time.  They're not their holding your hand in the ER, or watching your diet.

We spend two-thirds of our money on only 10% of us, but we can't afford to give them intensive attention?  Seriously?

Instead, we have created a health system that, for all intents and purposes, tries to pretend that we are all in that 10%.  It tries to treat us equally, that is, on average: the sickest of us do not get enough attention, the healthiest of us get too much. 

No wonder our doctors' offices are so crowded and our appointments last only 10 minutes.

We need a different health system for the majority of us, if only so that we can devote the necessary resources to the people who need to use our health care -- aka medical care -- system the most.

My vote is for a public health system.

You know, public health.  Like clean water.  Like vaccinations.  Like safer food.  Like reducing smoking.  It includes a variety of efforts that, intentionally, do not usually look much like medical care but which have drastic impacts on health and longevity.

In a recent The Upshot article, Aaron E. Carroll and Austin Frakt make the case for why we should spend more money on public health.  As they detail, we spend very little -- depending on what you count, as low as $10 billion and as high as $100 billion or so, either of which is basically a rounding error in our overall health spending -- but which often have dramatic paybacks.

After all, they note, much of the large increase in U.S. life expectancy in the 20th century came from public health investments, not more or better medical care.

Let's think about it:

• Our dismal maternal and child mortality rates are public health crises.
• Our opioid epidemic is a public health crisis.
• Our diabetes and obesity epidemics are public health crises.
• Our lack of exercise is a public health crisis;
• Our gun violence epidemic is a public health crisis.
• Our vehicular death problem is a public health crisis;
• Our homeless and suicide problems are public health crises;
• Our "food desert" problem is a public health problem;
• Our increased consumption of packaged food is a public health crisis;
• Our lack of enough safe, affordable housing is a public health crisis.

I could go on, but hopefully you get the point.  Think of your "favorite" national or local health problem and think hard about if it is a medical issue or if it is, at heart, a public health issue. 

For example, a recent BMJ study concluded:

It is time to shift the public health message in the prevention and treatment of coronary artery disease away from measuring serum lipids and reducing dietary saturated fat. Coronary artery disease is a chronic inflammatory disease and it can be reduced effectively by walking 22 min a day and eating real food. There is no business model or market to help spread this simple yet powerful intervention.

We need to make public health that model.

We're talking more about the importance of the social determinants of health (SDoH), and that is good, but my fear is that we're going to try to sweep them into our medical care system.  We medicalize too much.  We look to medical professionals and medical organizations too much for our health. 

But, as Howard Gleckman reported in Forbes, a new survey by Leavitt Partners:

...shows that while physicians generally agree that assistance with housing, transportation, and nutrition is important to the health of their patients, most doctors feel they are not responsible for helping them get these services

He adds that, from his own experience: "Physicians feel they do not have the time, knowledge, or interest to guide their patients to important non-medical assistance."

Let's no longer try to pretend this is what they should (also) do.  Mr,. Gleckman didn't go quite as far as I am in calling for a public health system to help address these needs, but I like to think he might agree.

We usually talk about a two-tier healthcare system as being a bad thing, and it is when it refers to people not being able to get necessary care due to socioeconomic factors.  But it may not be if we design each system to most effectively target the right population, and know who needs to use which when.

We need to stop view public health as a boring, not glamorous, small part of our healthcare system, but, rather, as the bedrock of it, and of our health.

Too Many Poor Excuses

I am so tired of reading yet another story about how we -- Americans -- cannot afford things.  Not luxury items, not splurges, not nice-to-have items.  Increasingly, it seems like too many of us can't afford what most people would consider basics -- food, housing, child care, transportation.

And health care, of course. 

A new study by the United Way ALICE Project (a collaboration of United Ways in 18 states) found that 51 million households can't afford a basic monthly budget that includes food, housing, health care, child care, and a cell phone.  That is 43% of all U.S. households. 

ALICE stands for Assets Limited, Income Constrained, Employed.  Of the 51 million households, two-thirds are ALICE ones.  These are working households that, in a prior era, might have been thought of as middle class. 

Now they are living paycheck to paycheck, and fearing sudden expenses -- like an unexpected health care bills.  Maybe they can't afford their insulin, their inhalers, or their epipens anymore, due to hard-to-justify price hikes. 

And, of course, God forbid they end up in the emergency room or get out-of-network care. 

Indeed, a hospital stay may result in a permanent reduction in income, even if you have insurance, according to a study released earlier this year.  Those economic impacts may be greater than the medical bills themselves. 

Coauthor Amy Finklestein, an MIT economist, said:

The sobering truth is that even people who have health insurance don’t have anywhere close to full insurance.  Not [only] for the reasons that we’re used to thinking about, [such as] cost-sharing and high deductibles, but because health insurance doesn’t insure the economic consequences of poor health."

Benedic Ippolito, an economist at the American Enterprise Institute, told The New York Times, "It makes me wonder: What exactly does insurance insure against, and is that the thing that we really want it to insure against."

It makes me wonder too.  

We shouldn't be surprised that the Commonwealth Fund recently found that the percentage of Americans who feel confident they can afford the health care they need continues to fall.  Only 62% re very or somewhat confident, down from 69% just three years ago.  Twenty-four percent reported health care has become harder to afford over the last year. 

Another new study found that 40% of us skipped a recommended test or treatment due to cost, and 44% skipped seeing a doctor when sick or injured due to concerns about costs.  More feared the cost of a serious illness than they did the serious illness itself. 

That is seriously wrong.

And there are no signs of anything improving.  The number of uninsured is rising again.  Actions by the Trump Administration to undermine the ACA exchange markets are estimated to have drastic increases on health insurance premiums -- potentially jumping by 35% to 94% over the next three years. 

Plus, HHS has proposed rules for so-called short-term health insurance policies that the CMS Actuary says will simply increase costs for everyone else, not to mention that those "covered" under those policies will find that coverage to be skimpy if/when they need it.

This all adds up.  Kaiser Health News reports that, in addition to bankruptcies due to health care bills, nearly 40% of adults under 65 have had their credit scores lowered due to medical debts.  A 2014 Consumer Financial Protection Bureau report found that almost 20% of credit reports had at least one medical collection account listed.  Those bankruptcies, higher credit scores, and debts in collection have lasting negative impacts, such as on mortgages and credit card payments. 

Meanwhile, HUD Secretary Ben Carson is proposing raising rents for low income renters -- potentially tripling rents for the poorest -- and the GOP is trying to make significant cuts to SNAP, the Supplemental Nutrition Assistance Program that helps some 45 million low-income Americans get enough to eat. 

It's a war on the poor and near-poor, and that is a war that too many of us are pretending doesn't matter to us.  It does, or it should.

Then there is my "favorite" new statistic: 94% of U.S. public school teachers spend their own money on school supplies.  In cities, in the suburbs, in rural areas; poor kids, not poor kids.  Just think about that: 94%.  It's a not-so-hidden tax on teachers.

On average, they reported spending almost $500 per year, on an average salary of about $60,000.  Some people are talking about arming our teachers, while we're not willing to even pay for the basic supplies in their class rooms.

No wonder we're seeing teacher protests around the country. 

I have previously written about how we are failing to adequately fund not just basic health needs but also supposedly essential things like education, infrastructure, even broadband.  We're doing a pretty good job of spending on prisons and defense, and on tax cuts to big businesses and rich people, but assuring that more people's basic needs are met, not so much. 

The sad truth is that only 39% of Americans say they could handle an unexpected expense of even $1,000 -- and 34% had had a major unexpected expense over the past year.  Not surprisingly, we are doing a terrible job saving for retirement.  Increasingly, we're both saying we'll have to rely on Social Security for our retirement income, while lamenting that we're not very confident it will be there when we need it.

This is not really a question of money.  The stock market is booming.  Corporate profits are strong.  Economic grow is good.  We, as a nation, have plenty of money.  It's mainly that too much of it is ending up in the hands of too few. 

These problems are not about our having enough money.  We do.  They are not just problems for "poor people."  They are problems for the majority of us.  These are problems of priorities, and somewhere along the way our have gotten screwed up. 

We're making too many poor excuses for not doing more and for not doing better.  It's time to stop. 

Our Ptolemaic Healthcare System

This one is going to make some people mad.  But maybe make some people think too.

Healthcare innovation is everywhere.  Telehealth will make virtual care actual.  Direct Primary Care (DPC) will get rid of the pernicious influences of fee-for-service and health insurers.   Precision medicine will make our care so...precise.  Virtual reality (VR) will be an important part of our health reality.  And artificial intelligence (AI) will help doctors deliver better care.

Truly, it is an exciting time to be in healthcare.  But when I read about all these great ideas, I can't help but think about the Ptolemaic system. 

For those of you who don't remember your science history, the Ptolemaic system started with two seemingly obvious assumptions.  First, that the earth was at the center of the universe.  Second, that everything in the universe revolved around the earth in circular motions, that being the most "perfect" path.

The trouble was that, as observations and predictions both got better, they didn't agree.  That forced several "fudges" to the theory, such as epicycles, eccentric motions, and equants.  Anything to preserve those "obvious" assumptions.  The Copernican revolution -- which took some 1500 years after Ptolemy to happen -- finally asserted that, no, the earth is not the center of the universe, and, oh-by-the-way, things move in elliptical orbits, not circles.     

Healthcare has not had its Copernican revolution yet.  We're still designing more intricate epicycles. 

Almost all of those exciting innovations being discussed start with an "obvious" assumption: the doctor-patient relationship.  We can debate whether our system could or should be "patient-centered," but that's just another epicycle. 

Where is the healthcare innovation that doesn't start with the basic premise that doctors are the gatekeepers (or maybe the keymasters) to our health, or at least to our health care? 

We keep reading about "Uber for healthcare."  It's about helping get patients to their appointments!  It's about getting doctors to patients, on demand!  It's about Amazon sending our prescriptions in drones!

No, it's none of those. Those are more epicycles.  As I wrote a couple years ago, Uber for Health Care Won't Play Nice.  Let me explain why.

Most health care innovations are as if Uber tried to help people find taxi drivers, or pick a taxicab, or see in advance how much the fare would be.  Or if AirBnB helped people research and book hotel rooms. 

Uber and AirBnB didn't care about the traditional taxi or hotel industries.  They didn't care what regulations those industries had to follow.  They said, hey, you want to get/stay somewhere; we know people who are interested in helping you with that.  We can connect you to those people. 

"Those people" weren't licensed taxi drivers driving licensed taxicabs operating under city-approved rates.  They weren't licensed hotels.  They were just people who could help you get or stay somewhere. 

Maybe Uber, AirBnB, did go a little too far in avoiding regulations.  That pendulum is swinging back (one suspects as much interest from governmental bodies in getting some tax/licensing revenue as in consumer safety), but it's not going all the way back to where the taxi and hotel industries were.  The genie is out of the bottle. 

That will happen in healthcare too.  Someone will figure out a way to avoid some or all of the crazy-quilt of healthcare licensing and regulatory requirements. 

You've got a health issue or concern; there is someone, somewhere, who can help you with it.  Perhaps it will be a doctor or other healthcare professional; perhaps not.  Whoever it is, they'll need to convince you of their expertise and how they've helped others with your issue.  You'll have to decide who and how to choose. 

That's "Uber for health."

This will drive physicians crazy.  This will make many of us quite nervous.  This will have the legislators, regulators, and licensing agencies scrambling to figure out how to stop it.  All of which begs the obvious question: why do we not have that kind of ability now?

Don't think it can happen?  It is already happening.  People have been importing prescription drugs from other countries for years.  It's not legal and it may not always be as safe as buying them here, but it sure can be cheaper.  And if you think there is no peer-to-peer prescription trading going on, you're kidding yourself.

It is going beyond those examples.  We've got people doing DIY for artificial pancreas.  There's already a movement in Sweden to microchip yourself, right now to not need ID cards or key cards, but with the promise to eventually do far more.  The New York Times just covered Grindfest, an annual meeting of biohackers.  Some of the hacks the article discussed sound, well, pretty out there, but we're going to see more of this. 

We're already starting to see DIY gene editing, as they also reported on.  What next?

If nothing else, it would be nice to own your own health records -- all of them -- and be able to share them with whomever you wanted, wherever they are, in order to get their advice and suggested course of treatment.  Even if they live in another country...or another state, or even city.    We can't do that now.  It's crazy -- and it is not going to last.

Let's be clear on one thing: all of us need, or will need, physicians at some point(s).  They're not going away, nor should they.   Sometimes things do go wrong, and we need their help.

But let's be clear about this too: most of us do not need physicians most of the time.   Physicians can help us stay healthy, but it is not clear that they can uniquely do so.

Unfortunately, we have a healthcare system -- or, more accurately, a medical care system -- that assumes that we always need physicians.  That is an assumption we need to challenge. 

Look, I'm not saying this kind of approach will work.  I'm not even saying it is a good idea.  I'm just saying that -- like it or not, ready or not -- someone is going to try it. 

If we really want innovation, if we really want to improve things, we have to be willing to question our assumptions.  All of them. 

Just ask Ptolemy. 

What's Your Sequence?

DNA sequencing -- genetic testing -- is in the news.  As it has been, and as it is increasingly going to be.

Whether we're really ready or not.

Geisinger President and CEO David Feinberg announced at HLTH Conference that it would make DNA sequencing part of its preventive care protocol, stating: "Understanding the genome warning signals of every patient will be an essential part of wellness planning and health management."

As Dr. Feinberg had said in a previous article:

The way we look at it, that's millions of Geisinger family members who no longer have to rely on the law of averages to forecast their health and make plans about their life and how they live it."  

Geisinger already had enrolled 200,000 participants in MyCode Comunity Health Initiative, its precision medicine initiative.  The new effort will expand on the efforts to identify genetic risks early.  "We’re going to start doing it the same way we would talk to patients about getting a cholesterol check," Dr. Feinberg told reporters.

And they're putting their money where their mouth is: patients won't pay for the sequences -- estimated at $300 - $500 per participant.  According to Forbes, Geisinger will pay for the sequencing via donor funds and insurance company quality initiative payments.  Dr. Feinberg is confident it is the right thing to do: "We think by scaling it we’ll hopefully more quickly show the cost-effectiveness of it, and it will become pretty obvious that everybody should be getting this.”

Geisinger is far from the only believer.  A report from the Garvin Institute for Medical Research declares that genomics is "already driving a remarkable paradigm shift in health practices and outcomes."  Its lead author, Dr. Thomas Barlow, says: "Genomics is changing healthcare – now and for future generations. We’re no longer merely forecasting change: instead, we’re watching it happen.” 

The above would be plenty of news to digest on its own, but Health Affairs had an issue devoted to Precision Medicine that generated some news of its own.

One of the articles that has generated a good deal of attention is one by Katherine A. Phillips and colleagues looking at the growth of genetic testing, with particular focus on 2014-2017.   They found that there are already over 75,000 genetic tests on the market, with 10 new ones coming on the market each day.

Absorb that for a second.  I'm trying to decide which number is the more startling.

Many of these tests are redundant, with only an estimated 10,000 unique test types.  Testing for pediatric and rare diseases are increasing fastest, followed by prenatal, cancer, hematology, and neurology, although spending on prenatal and hereditary cancer tests were highest.  They predict this will be a $7.7b market by 2020. 

Adding all these tests to clinicians' tool-set would seem like a good thing, but it may not be.  Those 75,000 variations of 10,000 test types makes picking the right version, from the right vendor, challenging.  And this is a challenge that most physicians are not ready for.

Another article, by Diane Hauser, et, alia, reported on the results of a survey of primary care providers on genetic testing.  The good news is that most had formal genetic education, and most had a positive opinion about the value of genetic testing; 70% thought it would be improving outcomes within 5 years. 

The worrisome news, though, is that only 14% had any confidence in their ability to interpret genetic test results, especially for patients at high risk for genetic conditions.  Only about a third had ever ordered a genetic test -- and previous experience with genetic testing did not increase their confidence. 

As the authors pointed out, this was not a hypothetical issue: the physicians surveyed were about to have their patients with African ancestry enroll in genetic testing designed to identify risk for kidney failure.  They were soon going to get results that they would have to explain and possibly do something about.

"Ten new tests a day — no one can be expected to master that," Ms. Hauser told The Washington Post, referring to Dr. Phillips' results.  "How are we going to help primary-care providers, who are barraged with all these genetic tests — some of which are very actionable and important, and some of which are not.”

Dr. Phillips shares the concern:

If I were a provider trying to figure out what to order, that's where this is in some way the Wild West, because we have so many tests out there.  Trying to sort out what to use, when and how much to pay for a test is pretty complicated.

The NIH urges consumers to be aware of three things when thinking about genetic tests: analytical utility, clinical validity, and clinical utility.   I.e.,

• does the test accurately detect the gene variant?
• how strongly is the gene variant related to a specific risk?
• are there diagnoses/treatments for the identified risk?

Meanwhile, the market for home testing is booming.  For example, in March the FDA announced 23andMe could market a test for gene mutations associated with risk for breast and ovarian cancer, which 23andMe CEO Anne Wojcicki called "a major milestone in consumer health empowerment."  

The FDA noted, though, that most mutations that would increase an individual's risk are not detected by the test.  A negative result doesn't mean you aren't at risk, nor does a positive one necessarily mean you are.  

Keep in mind as well that a recent report found a 40% false positive rate in variants reported by direct-to-consumer genetic tests (no words on other genetic tests).  "Bad" results may just be faulty results.  The authors caution that genetic tests need to be interpreted by qualified health care professionals, in the context of other risk factors.  Ms. Hauser might warn that those might not be so easy to find. 

DNA sequencing is not going away.  Nor should it.  Our DNA will soon become an integral part of our health history, and, sometime after that, of our treatment decisions.  The trouble is going to be the gap between those two. 

We will almost certainly know what genetic results might be a problem sooner than when we'll know what is likely to be a problem, and, in most cases, we'll probably know both of those before we'll know what to do about those problems.   Precision medicine is going to remain frustratingly imprecise for some time. 

So, go ahead and get your DNA sequenced.  Just don't expect it to be a magic bullet...yet.