Friday, October 11, 2019

VA for All!

We hear a lot these days about Medicare for All.  It has gone from being a fringe idea to being the litmus test for Democratic Presidential contenders, advocated most fiercely by long-time proponents Senator Bernie Sanders and Senator Elizabeth Warren.  A majority of Americans now support the concept, although what they think it means and how much they are willing to pay for it are less clear. 

The arguments for Medicare for All are simple: the current system generates too many profits (especially for health insurers and pharma), has too much administrative complexity, and exposes too many people to high cost-sharing and premiums.  Medicare for All would take care of all those, proponents assert.

So, I wonder -- why would people be calling for a new system that would still have thousands of private hospitals/facilities and millions of healthcare professionals, practicing FFS medicine using countless systems and data structures?  In short, why aren't people calling for VA for All?
Like Medicare, the VA -- more specially, its healthcare component, the Veterans Health Administration -- is charged with providing healthcare to a designed population, in this case, veterans.  Unlike Medicare, though, it does so as an integrated health system (by far the largest in the U.S.), with 170 VA Medical Centers, over a thousand outpatient facilities, and somewhere over 10,000 physicians.

Despite what you might read about problems with wait times (which may, in fact, be overstated) or poor care, studies have found that, generally, "The Veterans Affairs health care system generally performs better than or similar to other health care systems on providing safe and effective care to patients."  For some conditions -- PTSD or prosthetics come to mind -- it offers some of the finest care in the world. 

It offers a range of services that Medicare can only dream of, and it does so at, it is believed, lower costs than private coverage or even Medicare.  Plus, it also was an innovator in electronic health records and is today in telehealth. 

What's not to like?

Well, of course, the VA has capacity issues already, which has led to the Choice program, and we'd need to figure out what happens to all those current health care organizations and professionals.  Some of them would end up as part of the VA -- of course, with lower salaries and fewer administrative functions -- but many others simply wouldn't be needed.  It couldn't happen overnight, of course, but neither could Medicare for All. 

But, hey, as with driving health insurers out of business, some healthcare job losses are a small price to pay for better coverage for more people at lower costs, right? 

Skeptics might think this is just another way of saying the U.S. should adopt something like the U.K.'s National Health Service (NHS), but that can't be true, because those skeptics think NHS is socialized medicine but only have good things to say about the VA.  So what's the problem extending the VA to more of us?

The truth is that Medicare for All isn't really about lowering administrative costs or expanding coverage, but about picking two of the least popular parts of the healthcare system to criticize.  Health insurers and pharmaceutical companies are seen as big, faceless corporations, usually located somewhere else.  They're not your local hospital or personal physician, and they don't directly deliver care, so people feel free to criticize them at will. 

Credit: Patrick George/Kiplinger
But there's nothing that Medicare for All could do that an expanded VA for All couldn't do better.  It's just a simplistic, easily packaged catchphrase as a "solution" for a fiendishly complex mess of a healthcare system.

I don't think "VA for All" is the right solution either, but I also think that proponents of Medicare for All are not being quite honest about what they are proposing, or what it most likely do (as I've outlined previously).  Political campaigns are probably not the best time to have serious health reform debates, but it seems that that is when we usually try to have them. 

There's a lot wrong with our current healthcare system, and that includes with both Medicare and the VA.  I like a good health reform discussion as well as the next person, but I don't have much patience for "solutions" that gloss over realities and don't really address the true underlying problems. 

The core problems, I believe, are that we often don't really know what "works" in healthcare, or how to truly gauge quality of care. Wake me when we get to reform discussions that address those.   

Tuesday, October 8, 2019

Biology Really May Be Our Future

Many of us are fascinated by our various computing devices -- our smartphones, our smart watches, and an ever-growing array of smart devices.  What we sometimes forget is that we are biological creatures (at least, until The Singularity), and that even though biology as a discipline has been around much longer than computing, biology may yet supersede it.

If the 20th century was the era of computers, the 21st century may be the era of biology.  And the two may even merge. Hello, synthetic biology and biological computing!

Last week SynBioBeta hosted The Global Synthetic Biology Summit, "where tech meets bio and bio meets tech."  People were urged to attend "to see how synthetic biology is disrupting consumer products, food, agriculture, medicine, chemicals, materials, and more." 

Chrissy Farr of CNBC reported:
“The conference has an irreverent, counter culture vibe to it,” said Jorge Conde, an investor at Andreessen Horowitz, who spoke at the event. Conde said that the founders are a “new breed” and they reminded him of the first generation of Silicon Valley entrepreneurs in the era of Steve Jobs.
Indeed, the field is attracting tech insiders.  Former Google CEO Eric Schmidt spoke at the conference, and was practically giddy about the prospects:
I’m always interested in the question: What is changing the fastest right now? Because whatever that is determining the history of next year. There’s lot of evidence that biology is in that golden period right now.”
He also added: "Biology will undoubtedly fuel computing. Taking biology, which I’d always viewed as squishy and analog, and turning it into something that can be digitally manipulated, is an enormous accelerator."

It's not just talk.  Take a look at this list of synthetic biology companies and their funders:

SynBioBeta boasts: "The industry has raised more than $12.3B in the last 10 years and last year, 98 synthetic biology companies collectively raised $3.8 billion, compared to just under $400 million total invested less than a decade ago."  It counts 628 new synthetic biology companies formed in 2018 alone.

As a sure sign that the field has hit, or expects to soon hit, the mainstream, StatNews reports that synthetic biology now has a new lobbying group (and a new magazine). 

I've written before about biohackers and gene editing, how we're using DNA to create "lifelike" mechanisms,  how DNA may prove to be the ultimate storage medium, even how DNA may prove to be a computing platform.  They, and many other avenues, are all exciting, but I'm probably most interested in the latter two.  Can biology power our computing?

In 1995 (!), Bill Gates famously wrote: "DNA is like a computer program but far, far more advanced than any software ever created."  As Microsoft researcher Karin Strauss put it more recently: "Think of compressing all the information on the accessible Internet into a shoebox.  With DNA data storage, that’s possible."

Jayshree Pandya writes in Forbes: 
While silicon microprocessors have so far been at the heart of the computing world, they are reaching their physical limit. With on-going challenges of physical speed, energy efficiency, and miniaturization limitations of silicon microprocessors, there is a need to find alternatives. DNA is emerging as the alternative and has the potential to take computing to new levels. Moreover, with the cheap supply of DNA and the evolving DNA manufacturing processes, the process to develop DNA chip is becoming much cleaner and realistic. DNA-based computers will not only make computers smaller, but they will hold more data as well. The DNA microprocessors are transformative.

We're trying to learn from our biology.  Shelly Fan reported for Singularity Hub on an effort by Penn State researchers to develop a "probabilistic neural network" (PNN) that acts more like neurons and synapses.  The team pointed out that the brain deploys "billions of information processing units, neurons, which are connected via trillions of synapses in order to accomplish massively parallel, synchronous, coherent, and concurrent computation."  They sought to replicate that with their PNNs.  

They think they succeeded, at least as proof of concept.  As a result, they concluded:   
Combined, these new developments can facilitate exascale computing and ultimately benefit scientific discovery, national security, energy security, economic security, infrastructure development, and advanced healthcare programs.
Microsoft has a research team focused on biological computation, "developing theory, methods and software for understanding and programming information processing in biological systems."  The head of the group, Dr. Andrew Phillips, explained how biological computing is different:
So, it’s more like a chemical soup where you have thousands of proteins interacting in parallel in a noisy fashion, and many of these interactions can go wrong with some probability. But yet out of all that noise emerges a fairly robust algorithm that is used to compute things like, when should a cell divide?...So, these algorithms are actually very complicated for us to understand because we’re not used to that. We’re still trying to reverse engineer them.
Dr. Phillips believes "that programming biology is going to transform many of the industries that are in existence today. I think it’s a sort of an underpinning technology that will help transform medicine, food, energy, and build the foundations for a future bio economy that’s based on sustainable technology."  

Hold on to your hats.

There has been much speculation about nanobots swimming around in our body correcting problems, implantable computer chips, and brain-computer interfaces, such as Elon Musk is working on at Neuralink.  Some of these are already coming to fruition.  We're controlling paralyzed limbs, operating computers, even networking brains.  

All that's very exciting, for sure.  Still, I think it's a very 20th century notion to implant foreign objects into our bodies.  We've had some good results with doing that, and we're going to have even more options, but it still seems like only an interim approach.  

Reprogramming our cells, storing data in DNA, turning ourselves into even more powerful computers -- that's 21st century technology, and that will be 22nd century health care.  

Tuesday, October 1, 2019

Those Damn Fees

On the face of it, GoodRx and fintech company Dave wouldn't seem to have anything to do with each other. 

To be honest, I had never heard of Dave until yesterday, when I read that Dave was now valued at $1b, just two years after launching its financial management product.  They now claim 4 million customers, with another 800,000 on its waiting list. 

Dave's raison d'être is helping users avoid overdraft fees.  It uses AI to monitor your spending habits, warn you when you might be nearing an overdraft situation, and even advances you up to $100 to avoid the overdraft, with no interest.  It can either be linked to an existing bank account, or through a Dave checking account.  It even plants a tree every time you "tip" their service. 

Overdraft fees average around $35 per occurrence, but add up to over $34b annually, so the problem Dave is addressing is not a trivial one.  Still, I wonder: if Dave is valued at $1b, what would a service in healthcare like that -- say, for surprise bills -- be worth? 

Which brings me to GoodRx.

As many people know, GoodRx's mission has been to help people find more affordable prescription drug prices.  If you have a prescription, you can use their website or their app to find prices at nearby pharmacies, and often to use a coupon as well to further reduce your cost.  The company claims that since their inception in 2011, their customers have saved over $14b, $5b in 2019 alone. 

The range of drug prices GoodRx exposes is astonishing, as is their ability to track and display them, much less to target coupons.  The prescription drug industry has been technologically ahead of the rest of the healthcare industry as long as I can recall; for example, it was doing electronic claim submission in the 1970's.  It shouldn't be too surprising that a prescription-focused service like GoodRx is effectively doing what transparency companies like Castlight or Healthcare Bluebook have been trying to do for the rest of healthcare. 

GoodRx is now stepping outside its legacy space with its launch of GoodRx Care, a telehealth service powered by its purchase of HeyDoctor.  Online consultations start at $20 and can be used for women's and men's health, preventive care, and chronic care, and the online consultation can lead to prescriptions not just for drugs but also lab tests.  Their pricing, of course, is transparent. 

GoodRx co-CEO/co-founder Doug Hirsch explained: "In an increasingly fragmented and confusing healthcare system, our goal is to provide a one-stop shop for services that address most basic healthcare needs."  He further told CNBC: "We’re a marketplace in prescriptions, and with GoodRx Care, we’re a marketplace for both prices for medical care and we’re even offering medical care."

There are plenty of telehealth companies, and a fair number of transparency companies, but no one that I know of is doing in medical what GoodRx has done with prescription prices -- truly exposing costs, steering patients to least expensive options, and helping further reduce those costs, especially for those without insurance. 

The Administration has been advocating more healthcare transparency, but its latest effort to have hospitals disclose negotiated rates is not being met with open arms.  Similarly, despite widespread support to stop so-called surprise bills, the prognosis for federal legislation to address them is turning grimmer. 

We need Dave.  Or, rather, we need a Dave.

We need a service that people can use as they are getting or about to get healthcare services.  "Hey, Kim," it might say.  "You're going to see Dr. X about condition A.  You should expect it to cost $Z, and expect him/her to order A, B, and C, which would cost $Y.  You can get the best prices at ____.  And, oh, by the way, you'll still be in your deductible."

It might even suggest seeing Dr. X1 instead, who not only has better outcomes but also results in lower costs.  

If you still ended up with a surprise bill after all that, it might help you negotiate the bill to a more reasonable amount, and perhaps help you finance it.   

This service seems like a lot to ask for, but I don't really understand how GoodRx manages to stay on top of all the prescription pricing either, or how Dave manages to offer no interest financing for overdrafts either.  They each have different business models than others in healthcare and banking, respectively, but both models happen to be ones that help people be less surprised by unexpected costs.  

Those seem like business models healthcare should be embracing. 

Maybe Dave or one of its fintech rivals will focus on managing healthcare expenses as a niche.  Perhaps GoodRx's new foray into medical care services will broaden its appetite to expose prices and help consumers manage them.  Or, as many expect, Amazon -- which just launched its own virtual care clinic -- might finally bring its marketplace platform to bear on pricing healthcare.  

We don't yet know who it will be, butut it will be someone.
  
Earlier this year Jason Wilk, Dave's co-founder and CEO, said:  
Banks have failed their customers by building products that put their own interests ahead of the humans who use them. People don’t need predatory fees, they need tools that actually solve their challenges around credit building, finding work and getting access to their own money to cover immediate expenses. Dave is the banking product that works with its customers, not against them
Now substitute "banks" and "banking" with "healthcare," and you'd have a pretty good mission statement for a new healthcare company.  The question is, who will it be, when? 

Dave may kill, or at least hurt, traditional banks because people are upset about overdraft fees.  Netflix killed Blockbuster in part because people got annoyed with late fees.  Healthcare has plenty of fees that seem even more perverse -- and much larger -- than either of those (think facility fees or balance/surprise bills), making it even more ripe for similar disruption. 

The $1b valuation for Dave would be small change for the company that can do something about helping consumers with those unexpected costs. 

Tuesday, September 24, 2019

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.  

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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?

Tuesday, September 17, 2019

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.  
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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).  

Tuesday, September 10, 2019

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.  

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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.

Tuesday, September 3, 2019

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.