How Dare We?

The saying goes, out of the mouths of babes.  Or, in the case of Greta Thunberg, the mouth of a teenager.

I had been vaguely aware of Ms. Thunberg these past few months, but wasn't really sure who she was.  Someone on Game of Thrones, perhaps?  (Which, sadly, shows you how closely I follow either climate change or GoT).  But after her scathing put-down of climate change deniers at the UN this week, I'm thinking: gosh, we need that outrage in healthcare too. 

If you missed her speech, it's worth your five minutes:

"How dare you," indeed. 

For anyone who missed Ms. Thunberg's backstory, she is a 16 year-old student from Sweden, who has made climate change her mission.  She's been leading student protests about inaction on climate change for the past year, leading to a worldwide student protest last Friday that had as many as 4 million people participating.  She was at the UN this week as part of the United Nations Climate Action Summit. 

"Right now we are the ones who are making a difference. If no one else will take action, then we will,” Ms. Thunberg said at the New York City protest.  “We demand a safe future. Is that really too much to ask?"

She excoriated our so-called world leaders while at the UN:  

This is all wrong. I shouldn't be up here. I should be back in school, on the other side of the ocean...you all come to us young people for hope. How dare you?

Noting that thirty years of science have made the dangers climate change "crystal clear," she added:

You say you hear us and that you understand the urgency. But no matter how sad and angry I am, I do not want to believe that. Because if you really understood the situation and still kept on failing to act, then you would be evil. And that I refuse to believe."

As Ms, Thunberg told Robinson Meyer of The Atlantic, about climate change but also applicable to gun violence and a host of other problems, "We are not the ones who are responsible for this, but we are the ones who have to live with these consequences, and that is so incredibly unfair."  

Parkland survivors Credit: Peter Hapak/Time

This is not the first time we adults have been called out for our inaction on important issues that impact not just our health but the health of generations to come.  For example, survivors of the Parkland school shootings have been using their outrage and social media savvy to help mobilize action to finally break the logjam in America about reducing gun violence. 

They've been advocating for a year and a half now, and all we have are more "thoughts and prayers," as well as many more mass shootings.  Young people are speaking up; again, it is adults who are not acting.

Think about some of the many other issues that we are also failing to act on that have intergenerational health impacts:

Anti-Vaxx Movement: If there's something about which the science is even clearer than climate change, it is that vaccines work.  Vaccines save lives, reduce misery, and improve health.  So how is it that, in 2019, we have measles outbreaks?  Kids are supposed to rely on their parents to make good choices on their behalf, especially about their health, and getting vaccinated used to be one.  Now, people don't believe even their doctor's recommendation.  They're basing their decisions on what a friend told them, or the internet, or simply on their faith. 

As Dr. Paul Offit, an infectious disease expert, told The New York Times, "Science has become just another voice in the room.  It has lost its platform. Now, you simply declare your own truth."

Maternal and child health:  We claim to love babies and moms, but you sure couldn't tell it by the state of maternal and child health in the U.S.  We have the worst maternal mortality rates in the developed world, and it isn't any better for childhood deaths.  A Health Affairs study found that U.S. children have a 70% greater chance of dying before adulthood than in other developed countries. 

It's not only mortality but also morbidity.  We shouldn't have, for example, more children who are obese, have diabetes, or have allergies, but we do.  Those are things that will have lifelong consequences. 

Lost Einsteins: a 2017 report lamented how we are producing a generation of "lost Einsteins," children who would never live up to their potential (or survive birth/childhood) due to the socioeconomic situation they are born into.  We live in a country to extreme economic and health disparities.  Be born in the "wrong" place, to the "wrong" race/ethnic group, to the "wrong" parents, and your life choices may be greatly limited.  None of that should matter, but it does.  

It's one thing for an individual to squander his/her own opportunities, but it is something else entirely when our healthcare system is complicit on squandering the opportunities of a significant portion of younger generations.  

Infrastructure: The American Society of Civil Engineers gives the nation's infrastructure a D+ -- not just crumbling roads and bridges, but also schools, drinking water, and waste treatment.  The drinking water crises in Flint  and Newark are neither isolated nor have time limited impacts.  The health of many children is going to be irreparably impacted.

It's going to cost trillions of dollars to improve our infrastructure, money that we're leaving to our children and grandchildren to pay, while adversely impacting their health and ability to pay it in the meantime.  

------------

Let's not even go into how we fail to fund our social programs like Medicare, CHIP, Medicaid, or the Public Health Service, forcing future generations to deal with them, or how we allow silly but harmful products like vaping to be targeted at teens.  We are failing our children and their yet-to-be-born children.

As Ms. Thunberg said about climate change, our children and our grandchildren are not responsible for the mess we've made of our healthcare system, but they are the ones who will suffer the consequences. 

She's right; it is unfair. 

There should be student protests about the problems with our healthcare system.  We should be joining them.  We all know it is a mess, and still we tolerate it.  Concern and even outrage are not enough.  Action is needed.  How dare we allow our existing inefficient, ineffective, unfair healthcare system to continue to fail us?

It's Not the Health Insurers, Stupid!

After three years of our own government trying to undermine the Affordable Care Act (with the percent of uninsured now rising as a result), it's refreshing to hear politicians talking about getting the U.S. closer to universal coverage.  The debate among the Democratic Presidential candidates is not about the feasibility of universal coverage but about Medicare for All (which as ProPublica explained, is neither really Medicare nor necessarily for all) versus more incremental approaches.

The favorite whipping boy in our current healthcare system is the health insurance industry.  Candidates like Bernie Sanders or Elizabeth Warren decry the industry's profits, arguing that we'd be much better off abolishing private health insurance.  That appeals to many people because, really, who among us -- myself included -- hasn't seen larger deductibles, higher premiums, smaller networks, and perhaps some denied claims?

Credit: The New York Times

As easy as it is to blame the health insurance industry and its profits as the culprit for our system's dysfunction, it's not really fair.  As I'll elaborate: 

• its profits aren't that big;
• many healthcare organizations are making profits;
• our public health coverage programs usually aren't actually;
• why healthcare?

Health insurance profits

When politicians point to the estimated $20b+ in health insurance annual profits, it sounds like a big number.  It is a big number -- except when you are dealing with an industry like healthcare, which has expenditures of over $3.5 trillion.  $20b is barely a rounding error.  

One can rightly criticize the health insurance industry for many things -- its coverage is way too complicated, its decisions often too arbitrary, it has (historically) insulated us from the cost of services -- but the profits per se are not really the issue.  Take all its profits out, and we still don't make a dent in spending.  Instead of health insurance profits, we should be focusing on how to reduce the size of the industry and its administrative costs.

Even in a Sanders-style Medicare for all, some entities would be negotiating payment rates, doing utilization review, processing claims, handling customer service, doing provider relations, and marketing.  Just like health insurers.

Healthcare profits

Many politicians also point out the profits in the pharmaceutical industry, which dwarf that of the health insurance industry.  After all, the pharmaceutical industry has blundered its way into rivaling the health insurance industry as the sector's villains, largely due to its habit of using America as its favorite piggy bank through its aggressive (and mysterious) pricing here.  

But let's be clear: it is not just health insurers or drug companies making money in healthcare.  As Elizabeth Rosenthal recently pointed out, that beloved local institution, the hospital, is often making some pretty nice profits -- whether they are "non-profit" or not.  Even the supposed "non-profit hospitals can act in a very predatory manner, as Kaiser Health News has been exposing.  We're increasingly moving to local hospital monopolies, and those monopolies tend not to improve quality but, rather, increase costs.  

Add in physicians, pharmacies, device manufacturers, dialysis centers, and a host of other health care organizations and professionals, and it's pretty clear that there is a lot of money being made in healthcare.  

Public health coverage programs

Proponents of Medicare For All seem to ignore the facts that our current Medicare program has about a third of its enrollees in a private Medicare Advantage program, all of its Part D enrollees in private plans, and most of the people in "traditional" Medicare opt to have private Medicare supplements in addition to Medicare.  

Our other public health coverage programs, like Medicaid or TRICARE, now have most of their enrollees in private managed care programs.  It is true that the VA has stayed public, and is the closest thing we have to the United Kingdom's National Health Service as a true government-run system, but the biggest recent VA innovation has been to allow choice of private health care options.  

Some Medicare for All proposals claim that there would be no need for private insurance, but history suggests staying purely public would be difficult.

Why healthcare?

Healthcare is important, often essential.  We sometimes get too much of it, but it is hard to argue that most people would be better off without it, and many would be dead.  But that's true about many things in life.

We need to eat to live.  Most of us would miss eating before we'd miss healthcare.  To help ensure that people can afford to eat, we have SNAP (Supplemental Nutrition Assistance Program), which provides financial assistance to about 40 million people so they can purchase food.

What we do not do, though, is to suggest that groceries stores should not make profits.  What we do not do is say the government should be in the grocery business.  We're quite happy to be the financier for lower income persons and to let others make their own food choices, no matter how badly they do it.  

Similarly, most would say housing is an essential component of life, yet we have at least a half million people homeless everyday, with anywhere between six million to thirty million people in substandard/hazardous housing.  A third of us pay more than 30% of our income on housing.  We do offer public housing, but we support more people in private housing through Section 8.   What we do not say is that no one should make money in housing, or that the government should provide all housing.

Even in education, where most students are public, private options remain important to many people, at all levels of education.  

It's hard to see the argument why healthcare is the only essential for which private options should not exist.  

----------

Profits in healthcare may be a visible sore point to many, but profits in a capitalistic society shouldn't be a thing to be ashamed of.  The problem is usually how those profits are made.

In health insurance -- and in health care generally -- profits have been problematic because they often don't seem to be the result of making us healthy.  We shouldn't just be a conduit to making other people in healthcare richer; they should get richer if and only if they are actually helping us achieve healthier lives. 

We just have a poor understanding of how to achieve that goal, and how to shop for the people, organizations, and services that we need to do so.  If politicians, and everyone else involved in healthcare, would focus on those, we wouldn't need to focus on profits.    

(ICYMI, the title is an homage to Gerry Anderson's It's the Prices, Stupid (as well as David Abernathy's It's the Monopolies, Stupid).  

Our Workarounds Aren't Working

In yet another headline I wish I'd written, Theresa Brown -- nurse, author, clinical faculty member, Ph.D. -- wrote a provocative op-ed for The New York Times: The American Medical System Is One Giant Workaround.  That's a great description, and one that anyone who has ever touched the healthcare system can easily appreciate.

Never mind the insightful but somewhat inside-baseball examples Dr. Brown mentions; who among us in our healthcare journeys has not seen the sticky notes, been asked to send a fax, gotten stuck in a telephone tree, or had to refill (paper) forms?   Those and countless other examples should make us all realize the creaky platform upon which our actual care depends.

To call it a "system" is to give our healthcare system way too much credit.

Not a healthcare workaround, but a metaphor for them

Let's go through the big workarounds about our system.

Coverage
Dr. Brown noted that "Obamacare, though, was never intended to make sure that all Americans had affordable care; it works around our failure to provide health care to all our citizens."  Indeed, ACA was able to cut the percent of people without health insurance in half, but still left some 8% without coverage.  Even worse, that percentage is now rising again.

The big workaround is that we have such a multiplicity of sources of coverage: about 55% with employment-based coverage,18% each for Medicare and Medicaid, 11% with individual coverage, and 4% for military-related coverage (TRICARE, VA, CHAMPVA).  Some people are covered by more than one source.  

ACA finally put some parameters about what (private) coverage had to include and what kinds of cost-sharing were permissible, but few see different plans as easily comparable, or even understandable.  And if you change jobs, gain or lose income, or become old enough or disabled, you may have to also change your source of coverage/plan of benefits.

No wonder why Medicare-for-All has become a rallying point, although few really understand what that might look like or how it would have to be financed.  

If I would wave a magic wand, I'd say that everyone should automatically be covered --period, full stop -- and that we end employment-based coverage.  

Quality
We talk a lot about quality in our healthcare system, often like to brag about it, but the fact of the matter is that we don't even really know what it means, from an empirical standpoint.  We have a hard time defining it, much less trying to measure it.  It is no surprise, then, that we have what has been described as an "epidemic" of unnecessary or inappropriate care, possibly as much as a third of all care.

Healthcare's workarounds are legion.  We have a variety of licensing, credentialing, and accreditation requirements, more regulations than anyone could count, a malpractice system that manages to miss most actual malpractice, and an ever-growing set of "quality" measures that no one really think really do.  We collect data - lots of it -- but are reluctant to share it, even with the patients it reflects and even if sharing would improve our understanding of it.  We are slowly trying to move to "evidence-based medicine," but most of what healthcare professionals do is not.

There are healthcare professionals who are incompetent or motivated by greed.  There are healthcare institutions from which you should not get at least certain kinds of care.  There are mistakes that are made.  There are treatments that don't really work.  We should know who/what they are, and the good healthcare professionals/institutions would benefit by our knowing.   

If I could wave a magic wand, I'd suggest we treat quality not as a largely implicit, intangible aspect of health care but as an indispensable feature, and make defining and measuring it our top priority. Fix this and other problems become more tractable.

Price
I deliberately am using "price" instead of "cost" because, as was pointed out long ago and repeatedly since, "It's The Prices, Stupid."  Our prices for almost everything healthcare related are widely higher than anywhere else in the world.  Worse than that, those prices vary wildly by type of coverage, location of the service, and the person/institution delivering it.  Our healthcare system seems to spend more time, attention and money maximizing billing than getting patient care right. 

We act outraged at surprise billing, patients being hounded by debt collectors, and the murky role of PBMs in prescription drug pricing, to name a few, but they are almost inevitable outcomes of our workaround that allows such a multiplicity of prices.  No one really seems to know what a price for something "should" be, and no one really seems motivated enough to ensure they aren't excessive.  Everyone simply tries to pass the cost of those prices along -- to the taxpayers, to people paying health insurance premiums.

If I could wave a magic wand, I'd suggest a set of fully disclosed, comprehensible prices that do not depend on source of insurance, with variation allowed only to reflect measurable differences in quality. 

Convenience
The U.S. healthcare system is not, and never has been, centered around the patient.  We make sick people go to physician offices or healthcare facilities.  We warehouse even sicker patients in hospitals or nursing homes -- away from their friends and family, out of their familiar settings -- because it is more convenient for the healthcare professions who work in them.  We spend way too much of our time in the healthcare system waiting for someone to help us, usually never sure when that help will happen. 

Sure, healthcare now gives patients online portals (which don't usually talk to other healthcare portals they might use), allows patients to fill out some forms online (which often doesn't seem to preclude having to subsequently fill out more in person), even offers virtual care options (although probably not with the healthcare professional patients know).  The rest of the world is mobile, real-time, and on-demand, and healthcare is still faxes, far-in-the-future, and in-person. 

If I could wave a magic wand, I'd say that where and when a patient gets care and advice needs to be as important in healthcare as it is for other services consumers use.  

--------

Unfortunately, I do not have a magic wand.  We live in a world of compromises.  But those compromises have led to our current healthcare system, which we can no longer afford and in which we are not achieving the health outcomes we should expect.  We're paying premium prices for mediocre outcomes. 

Our workarounds have failed.  It is time for real fixes.

Here There (Used To) Be Hackers!

You may have missed it -- I know I did -- but this past weekend was Biohack the Planet 2019, the annual conference that celebrates the biohacking movement.  Fortunately the good folks at StatNews were on top of things, reminding us that biohacking is something more of us should be paying attention to. 

Biohackers may like to think of themselves as rebels, even pirates, but, as one of the speakers said, biohacking may be growing up. 

Credit: Biohack the Planet

If you're not familiar with biohacking, Vox did a deep dive earlier this summer. It's about improving your body, sometimes altering it, and can range from meditating to altering your diet to implanting chips to DIY gene editing.  Technology often plays a key role.

Biohacking has had some celebrated successes, like a 15 year old student developing a cheap, fast, 100% accurate test for pancreatic cancer or the Open Artificial Pancreas System project (#OpenAPS). 

MIT Technology Review reported on a biohacked version of Glybera, a $1 million per treatment gene therapy that was introduced in 2015.  A group of "independent and amateur" biologists claim to have developed a simpler, low-cost version of it in two months for about, oh, $7,000. 

Andreas Sturmer.  Credit: MIT Technology Review

Gabriel Licinia, who spoke at the conference, told Technology Review: "This was developed in a shed in Mississippi, a warehouse in Florida, a bedroom in Indiana, and on a computer in Austria."   The team included Andreas Sturmer, an Austrian biologist who thought of reverse engineering Glybera; Licina, a biologist in Indiana, and David Ishee, a Mississippi biohacker. 

For what it's worth, Licinia told Stat that he thinks of himself not as a biohacker but simply as a biologist. 

Glybera treats a very rare blood disorder and, in fact, was pulled from the market in 2017 because manufacturing it wasn't deemed cost-effective.  The new version, which the developers call Slybera, doesn't work in quite the same way, nor has it gone through the same kind of testing.  Mr. Licinia admits," "I’m not saying that we have a completed gene therapy.  Only that we have one piece.” 

The high cost and lack of availability of Glybera make the biohackers' effort more defensible.  Michael Hayden, who led the original research on Glybera and was unhappy about the drug being priced so high, told Technology Review: "The right to access medicine is a social-justice issue.  Any way to provide potential benefits to patients is entirely meaningful, and I would never stand in the way [of biohackers]."

Mr. Licinia said at the conference that they want others to duplicate their work and even to work with the FDA.  Perhaps that illustrates why he told the crowd, "I would like to propose that we grow up a little bit.”

Credit: Biohack the Planet

Stat reported how the conference is edging towards looking like more traditional scientific conferences, including poster presentations and vendor booths.  Speakers debated peer reviewed journals, working with regulators, perhaps even its equivalents of institutional review boards.  Mr. Licinia said: "We’re so busy running away from this terrible thing that we see that we’re not willing to acknowledge that there is value in some of it. What I really want to see is just a middle ground.”

Conference organizer Josiah Zayner, who has been known for some pretty daring biohacking stunts, largely agreed: 

It’s a tough one, right, because if you build the system that you’re trying to break out of, it’s kind of like: Why are you trying to break out of that system? Then you become a gatekeeper of information, you become a gatekeeper of certain things, and I think that’s the opposite of what we all want."

Biohackers may think of themselves as engineers or biologists or simply people trying to use the available technology tools, which increasingly include sophisticated ones like CRISPR.  That's a problem for regulators.  As Vox put it,

Existing regulations weren’t built to make sense of something like biohacking, which in some cases involves risky procedures and stretches the very limits of what it means to be a human being. That means that a lot of biohacking pursuits exist in a legal gray zone: frowned upon by bodies like the FDA, but not yet outright illegal, or not enforced as such. As biohackers traverse uncharted territory, regulators are scrambling to catch up with them.

Earlier this summer California passed a bill -- the first of its kind in the nation -- to outlaw DIY genetic engineering kits.  Similarly, the FDA has warned people against other biohacking efforts like "young blood transfusions" and fecal transplants.  But, as Dr. Carlson told Vox in regards to the California law, "This technology is available and implementable anywhere, there’s no physical means to control access to it, so what would regulating that mean?"

And that, increasingly, is going to be the problem with biohacking generally.  

Credit: Josiah Zayner

Rob Carlson, a longtime advocate of biohacking, told Vox sees the term "hacking" as problematic:

“It’s a way of categorizing the other — like, ‘Those biohackers over there do that weird thing.’ This is actually a bigger societal question: Who’s qualified to do anything? And why do you not permit some people to explore new things and talk about that in public spheres?”

Healthcare has always prided itself on its closed guilds of experts, such as physicians or pharmacists, and for having the opposite of technology's "move fast and break things" mind-set.  And if we were getting the health outcomes we want, at a cost we can afford, that might continue to be fine.  But we're not.  

Some - such as neuroscientist and former MIT president Susan Hockfield -- believe that the 21st century will be the age of biology, with a convergence of biology and engineering.  Physicians are smart, well educated professionals, but they're not (usually) biologists, engineers or, for that matter, computer scientists.  Biohacking may help get us to places that traditional medicine would take much longer -- if ever -- to get to.

It has been all-too-easy for healthcare to regard biohacking as a fringe movement that was, at best amusing and at worst dangerous.  It's also been natural for some biohackers to view what they do as DIY efforts that were their own business.  Neither side can afford to think those ways any longer.

It is time, as Mr. Licinia said, for biohacking to "grow up a little bit," and for "traditional" medicine to recognize that the 21st century is going to include it.