Examining How Senate Republicans Frame Their Health Care Bill

Examining How Senate Republicans Frame Their Health Care Bill

You can find the full text of the Senate Bill here.

Following is the Senate Republicans summary of their Obamacare replacement bill, with comments by NYU’s Jason Chung.

Seven years ago, Democrats imposed a risky health care experiment on Americans that led to skyrocketing costs and collapsing insurance markets.  Senate Republicans are working to fix the mess Democrats made by acting to rescue the millions trapped by Obamacare.

Jason Chung: While Obamacare has been largely successful in its aims to get millions of uninsured Americans medical coverage, including low-income and those with pre-existing conditions, it has also thus far failed to rein in premiums.  Some of that can be attributed to Obamacare failing to institute a public option, which would charge premium lower by 7% to 8% according to the Congressional Budget Office.

This is a nuanced position.  One can support former President Obama for extending coverage for up to 17.7 million more people and criticize him for failing to account for or communicate the possibility of rising premiums in an unchecked for-profit health insurance model.

The discussion draft will:

Help stabilize collapsing insurance markets that have left millions of Americans with no options.

Jason Chung: As noted by the New York Times, Obamacare failed to create competition in the insurance marketplace but it didn’t create the lack of options that already existed.

Free the American people from the onerous Obamacare mandates that require them to purchase insurance they don’t want or can’t afford.

Jason Chung: Though the individual mandate was one of the least popular elements of Obamacare, it still had the support of 50% of  those polled in March 2017.

http://www.cnn.com/2017/03/07/politics/health-care-replacement-poll/index.html

It’s noteworthy that the individual mandate was actually the creation of conservative economist, Mark Pauly, to solve the free rider problem

https://www.washingtonpost.com/blogs/ezra-klein/post/there-was-a-reason-conservatives-once-supported-the-individual-mandate/2012/03/30/gIQAiddnlS_blog.html

Without a single payer option, it is notable that any individual mandate will have difficulties as some people will simply not comply with the law or have coverage that is too low as the Cato Institute notes.

https://www.cato.org/blog/two-reasons-why-individual-mandate-will-not-solve-free-rider-problem

Improve the affordability of health insurance, which keeps getting more expensive under Obamacare.

Jason Chung: The draft bill includes the sunset of “Essential Health Benefits” as per s. 126(b).  These benefits currently ensure that health insurance includes items that make having health insurance worthwhile such as:

–        Outpatient care

–        Emergency room trips

–        In-hospital care

–        Pregnancy, maternity and newborn care

–        And more…

http://www.nbcnews.com/health/health-care/gop-health-care-debate-what-are-essential-benefits-n737646

Dropping these provisions would bring down the costs of basic premiums but also ensure that the most basic coverage is saddled with unaffordable co-pays and deductibles for those least likely to be able to afford them.

Preserve access to care for Americans with pre-existing conditions, and allow children to stay on their parents’ health insurance through age 26.

Jason Chung: This was a key promise made by then-candidate Trump to 60 Minutes on the campaign trail.  He admitted at the time that this would “add costs”.

https://www.forbes.com/sites/brucejapsen/2016/11/20/trumps-epiphany-to-let-young-adults-stay-on-their-parents-insurance/#163538357423

Strengthen Medicaid for those who need it most by giving states more flexibility while ensuring that those who rely on this program won’t have the rug pulled out from under them.

Jason Chung: States would have more flexibility but the impact is unclear.

Currently, Medicaid funds all needs of patients but the new s. 1903B states that starting 2020 states will have to choose between a  capped  block grant or a capped amount per capita.

Overview of the Discussion Draft of Senate Amendment to H.R. 1628

Help stabilize collapsing insurance markets that have left millions of Americans with no options.

Short-Term Stabilization Fund: To help balance premium costs and promote more choice in insurance markets throughout the country, this stabilization fund would help address coverage and access disruption – providing $15 billion per year in 2018 and 2019; $10 billion per year in 2020 and 2021.

Jason Chung writes: S. 106(h)(1) specifies that these amounts are intended to “fund arrangements with health insurance issuers to address coverage and access disruption…” Rand Paul opposes this fund as an example of “new entitlements”.

http://thehill.com/homenews/senate/339008-four-senate-conservatives-say-they-oppose-obamacare-repeal-bill

Cost-Sharing Reductions: Continues federal assistance – through 2019 – to help lower health care costs for low-income Americans in the individual market.

Jason Chung writes: 

Ensured by s. 207 but s. 208 explicitly repeals the cost-sharing subsidy after 2019.

Extending the subsidy but eliminating penalties is described as “a contradiction in many ways” by Michael Dowling, the CEO of Northwell Health.  He points out that subsidies will now have to be substantial to attract people.

https://www.usatoday.com/story/news/politics/2017/06/22/keeping-money-insurance-subsidies-gop-health-bill-may-lower-premiums/103102580/

Free the American people from the onerous Obamacare mandates that require them to purchase insurance they don’t want or can’t afford.

Repeals the individual and employer mandates.

Improve the affordability of health insurance, which keeps getting more expensive under Obamacare.

Long-Term State Innovation Fund: Dedicates $62 billion, over 8 years, to encourage states to assist high-cost and low-income individuals to purchase health insurance by making it more affordable.

Tax Credits: Targeted tax credits will help defray the cost of purchasing insurance; these advanceable and refundable credits – adjusted for income, age and geography – will help ensure those who truly need financial assistance can afford a health plan.

Jason Chung: Eligibility for the premium tax credit will be reduced from those making 400 percent of the poverty line to 350 percent, as per s. 102(a)(1)(A). But, as the Atlantic notes, the poor and near poor would probably fare slightly better under this regime.

https://www.theatlantic.com/politics/archive/2017/06/ahca-senate-draft-medicaid-changes/531231/

Health Savings Accounts: Expanded tax-free Health Savings Accounts to give Americans greater flexibility and control over medical costs; increased contribution limits to help pay for out-of-pocket health costs and to help pay for over-the-counter medications.

Repeals Obamacare Taxes: Repeal costly Obamacare taxes that contribute to premium increases and hurt life-saving health care innovation, like the taxes on health insurance, prescription drugs, medical devices, and “high-cost” employer sponsored plans.

Jason Chung: The Democrats are sure to focus on ss. 112 and 113 which repeals taxes on pharmaceuticals and medical device

companies – two constituencies not exactly popular with the public at the moment.

https://fivethirtyeight.com/features/republicans-obamacare-repeal-would-cut-taxes-but-mostly-in-blue-states/

Oddly, s. 118 repeals the tanning tax despite the usage of tanning salons leading to increases in rates of melanoma, basal cell carcinoma          and squamous cell carcinoma.

https://www.cdc.gov/cancer/skin/basic_info/indoor_tanning.htm

Senator Bob Casey (D- PA), highlights this “without comment”.

Empowers states through state innovation waivers (Obamacare 1332 Waiver): Provide states additional flexibility to use waivers that exist in current law to decide the rules of insurance and ultimately better allow customers to buy the health insurance they want.  Allow the Department of Health and Human Services (HHS) to fast-track applications from states experiencing an Obamacare emergency.

Jason Chung: 1332 waivers allow states to develop innovative solutions for their individual health care markets.  Hawaii’s application was the first in the nation to be approved.

https://www.cms.gov/CCIIO/Programs-and-Initiatives/State-Innovation-Waivers/Downloads/Hawaii-1332-Letter-final-and-signed.pdf

It remains to be seen how Republicans will react if 1332 waivers are used to push through single-payer health care in certain states.

http://www.newsweek.com/public-option-healthcare-slipping-through-back-door-498413

Preserve access to care for Americans with pre-existing conditions, and allow children to stay on their parents’ health insurance through age 26. (There are no changes to current law as it applies to Veterans, Medicare, or Social Security benefits.) 

Jason Chung: S. 202 provides states with $2,000,000,000 in grants for fiscal year 2018.  But this may be a one-off handout as it has no apparent mechanism for renewal.

Strengthen Medicaid for those who need it most by giving states more flexibility while ensuring that those who rely on this program won’t have the rug pulled out from under them.

Targets Medicaid to Those Most in Need: In 2021, begins gradual reductions in the amount of federal Obamacare funds provided to expand Medicaid, restoring levels of federal support to preexisting law by 2024 while providing fairness for non-expansion states.

New Protection for the Most Vulnerable Guarantees children with medically complex disabilities will continue to be covered.

Provides additional state flexibility to address the substance abuse and mental health crisis.

Flexibilities for Governors:  Allows states to choose between block grant and per-capita support for their Medicaid population beginning in 2020, with a flexibility in the calculation of the base year.  Allows states to impose a work requirement on non-pregnant, non-disabled, non-elderly individuals receiving Medicaid.

New Protections for Taxpayers: Curbs Medicaid funding gimmicks that drive up federal costs.

Can Amazon Crack the Rx Code?

Can Amazon Crack the Rx Code?

Although many participants in the healthcare supply chain like to shroud drug transactions in a cloak of complexity and regulation, drugs are just ‘packaged technology’ and could be transacted much like other technology-based products, albeit regulated ones. As those in the Rx supply chain know, drug transactions have been carefully engineered to be anything but simple.

There is a lot of scuttlebutt about retail powerhouse Amazon bringing its proven brand of simplicity to the drug markets. We at VIVIO Health applaud this effort and hope it becomes successful as the result will be significant progress toward a market-driven industry, a much-needed first for healthcare consumers. Unfortunately, Amazon, even with its storied history of disrupting archaic industries must overcome four key structural roadblocks.

It’s easy to see the Amazon experience starting with consumers who are buying generic prescriptions either without insurance, when the price is lower than their copay, or as purchases counting toward plan deductibles. Beyond this point, Amazon’s path gets significantly bumpier. After satisfying deductible requirements, many consumers only pay 10-20% of the purchase price as coinsurance cost while the plan pays the rest. Amazon knows many people’s post-deductible out-of-pocket costs, especially on higher cost generic and branded drugs, will be significantly lower when using their plan rather than the Amazon platform. This is the first structural challenge they need to overcome.

To overcome this obstacle, Amazon will need to be designated as ‘in network’ by the major pharmaceutical benefit managers (PBMs) which is the second structural challenge. Without this designation, Amazon won’t be reimbursed as a supplier since these benefit managers control who gets reimbursed and who doesn’t. All major PBMs have their own mail order operations and as a result prevent other suppliers to ship via mail by removing them from their network. Amazon has a few options here. They could develop partnerships with independent pharmacies, but this introduces one-by-one negotiation, supply chain and regulatory complexity. A turnkey but expensive solution to immediately achieve scale would be for Amazon to buy a large PBM. If Bezos and team aren’t willing to do either, then an indirect but still viable path would be to convince large employers and employer purchasing groups to mandate in network status for Amazon and disallow any surcharges.

Third, today’s drug transaction model requires prescriptions (‘scripts’) to be delivered electronically to pharmacies. While on the surface that sounds like it would make the process easier, like most things healthcare-related, it too is controlled by a little known company that dominates the majority of script transactions in America. Coincidently, this company is owned and controlled by PBMs and legacy pharmacy chains. It along with large electronic medical record (EMR) vendors have implemented prescription workflows in a manner that has effectively removed even the few consumer choices that existed when we had paper scripts. Default choices on EMR systems dictate where scripts go preventing most consumers from choosing pharmacies based on typical preferences like price and convenience. Worse, state pharmacy boards have been the drivers of arcane pharmacy drug transfer laws making e-script movement from one pharmacy to another a manual and arduous process. It really is as if the pharmacy now ‘owns’ a consumer’s scripts. Yes, Amazon has the clout to fight state pharmacy boards and give the script back to the consumer, but this process will be a tough uphill battle. Amazon could of course jumpstart this by evolving and creating technologies that can create a new pathway.

Fourth, Amazon will have to cut through a Gordian knot of perverse supply chain incentives that have made Heather Bresch of Mylan (Epi-Pen) and Martin Shkreli (Daraprim) household names. Mysterious rebates amount to kickbacks of hundreds or even thousands of dollars per script that rarely benefit the consumers, employers and taxpayers who actually pay for healthcare. Killing these nearly invisible rebates would be another nail in the coffin of today’s opaque drug supply chain while opening the door to competitors like Amazon to create efficient markets for high cost drugs. Brand rebates, will likely force Amazon to follow the easier path of selling generics that comprise 90% of all scripts, but only about 20% of dollar volume. Cracking the remaining 80% of spend will require directly negotiated agreements with pharmaceutical manufacturers or better yet development of new processes that allow open market competition for brand drugs.

While there have been recent announcements of innovation in this space, it’s reasonable to question whether these new solutions are really wolves in sheep’s clothing. For example, there is a new low cost offering from a partnership between an online discounter and a PBM. Great, right? Unfortunately, the fine print in this program disallows employer-sponsored plans from reimbursing cost conscious consumers for purchasing the drug for less than what the plan normally pays for the same drug, effectively squashing adoption of this program for the majority of Americans. Why would these two well-known companies construct their service in this way? It’s pretty simple: lowering initial costs helps drive brand drug use before the consumer deductible is met, while continued purchases through the consumer’s plan are subsidized by employers paying highly inflated prices. This ingenious scheme has the same net result as copay cards; namely, making American consumers unbelievably price insensitive to the actual cost of the drug.

Realistically, history shows just how difficult it is to crack the Rx code. Two examples are worth mentioning. First, one of the world’s largest companies tried to disrupt the drug industry a decade ago when they offered a revolutionary generic drug pricing program. Fast-forward to today and you’ll find this company has single digit market share, certainly better than nothing, but still a rounding error compared to the incumbent legacy players.   A second example showcases just how much control PBMs wield even on large established incumbents. A few years ago, when a contract between a large public pharmacy chain and one of the major PBMs failed to materialize. Wall Street’s brutal response to the well-regarded retailer was a 33% loss in market cap forcing the retailer to bow to the intermediary’s demands.

The US drug industry is playing a brilliant game of cat and mouse against disrupters like Amazon. Over the last five years, margins and revenue have shifted from generics and brand drugs to specialty and even more exotic orphan drugs. In 2003, specialty drugs comprised 1% of all scripts but accounted for what we once thought was an outrageous 11% of total drug spend. Fourteen short years later, specialty drugs still comprise about the same percentage of scripts, but will soon account for 50% of total US drug spend.

I am not privy to boardroom discussions at entrenched supply chain players, but it’s a fair bet they believe themselves to be several steps ahead of Jeff Bezos even in the unlikely event that Amazon captures a majority of scripts written in America. But American consumers desperately need innovators who have the scale and deep pockets to reengineer the drug supply chain along with the strength of character to stand up to a powerful and entrenched industry. Jeff Bezos and Amazon stand as good a chance as any to break some china and crack the Rx industry and that would be a consumer problem worth solving.

PRAMOD JOHN is CEO of ViV!O Health

Trump’s Brain: What’s Going On?

Trump’s Brain: What’s Going On?

In late May the science and health news site STAT ran a provocative article titled: “Trump wasn’t always so linguistically challenged. What could explain the change?”

Not surprisingly, the piece went viral.   After all, aren’t most of us wondering whether something is up with the President’s—how shall I say it—state of mind, psychological status, character, personality, and yes, mental health?

For over a year, there’s been speculation about this. Most of the talk is loose and politically inflected. But substantive reflections by mental health professionals and serious commentators are on the rise.

At first, media outlets were very careful. They didn’t want to say the president was “lying” let alone possibly crazy.   Their caution was grounded mostly in journalistic ethics and policies. But that caution was also attributable to a thing called the “Goldwater Rule,” which warrants explaining because it infuses this whole issue.

Barry Goldwater, the Republican nominee for president in 1964, successfully sued a now-defunct magazine called FACT (for $50,000) after the magazine ran a pre-election special issue titled “The Unconscious of a Conservative: A Special Issue on the Mind of Barry Goldwater.”

The two main articles in the magazine contended that Goldwater was mentally unfit to be president.   According to Wikipedia, the magazine “supported this claim with the results of a poll of board-certified psychiatrists. FACT had mailed questionnaires to 12,356 psychiatrists, receiving responses from 2,417, of whom 1,189 said Goldwater was mentally incapable of holding the office of president.”

The other 1,228 psychiatrists declined to render a judgment. Most of them cited a de facto rule among mental health professionals that speculating about the mental health status or diagnosis of people not in their own care—and especially public figures—was unethical and very unwise.

Though it took a few more years, the American Psychiatric Association in 1973 codified this practice by adding what is now called the Goldwater Rule to its ethics guidelines.

So, to be clear, the Goldwater Rule applies to mental health professionals, but because of the successful lawsuit came to apply to media as well. Idle chatter or speculation about the mental health of public figures was to be generally avoided.   And it was, for many years.

Fast forward to spring 2016. The presidential campaign is in full swing and Trump is saying and doing some very strange, unconventional things. In response, a small band of psychiatrists and clinical psychologists, under the banner of an ad hoc group called “Duty to Warn,” decided to violate the Goldwater Rule.

In articles and blogs, the group claimed that Donald Trump displays “an assortment of personality problems, including grandiosity, a lack of empathy, and ‘malignant narcissism.’” Separately, the group’s leader, psychologist John Gartner, said Trump “has a dangerous mental illness.”

The media and social media, of course, picked up on this, and commentaries begin to appear. Most were online but some found their way into the mainstream media. Most notably, on March 7, 2016 The New York Times publishes an essay titled, “Should Therapists Analyze Presidential Candidates?” by Robert Klitzman, a professor of psychiatry at Columbia University.

Klitzman’s conclusion: mental health professionals and the media should stand firm on the Goldwater Rule and not speculate on the mental health of presidential candidates, including Trump. Four days later, on March 11, 2016, in letter to the Times, the president of the American Psychological Association agreed.

As Trump’s chances of electoral success seemed remote to everyone, the discussion subsided. Then, surprisingly, Trump wins the Republican nomination and the presidency.

And much of the nation is in shock.

The issue of whether Trump is mentally (clinically) afflicted in some way is no longer academic, or a fun pastime subject.   Millions of people – the vast majority of them Democrats, of course—think something is seriously wrong with the man. And they talk about it all the time. At home and around the proverbial water cooler, in bars, and on the web.

Indeed, Trump commentary and jokes quickly becomes a national pastime, as the president-elect and then president fails spectacularly to honor his pledge to “become really presidential, so presidential” or conform to behavioral norms. Much of the commentary and humor is tinged with the implicit or explicit talk of Trump’s mental stability. This become a meme, if you will.

As the months go by, idle chat becomes more formal and liberal op-ed columnists—especially those affiliated with the Times and The Washington Post—are less and less restrained in suggesting President Trump suffers from a clinical disorder.

The words narcissism and “instability” are invoked over and over. But there’s also reference to the president’s erratic behavior, aggression, malevolence, lying, paranoia, impulsiveness, inconsistency, poor judgment, and self-destructive behavior.  And, of course, there’s that painful-to-watch inability to form coherent thoughts when not scripted. (Yes, we are getting back to that and the STAT story in just a minute.)

But first, fast forward again to Feb. 13, 2017 when in response to a column in the Times by Charles Blow, Dr. Lance Dodes and 34 other psychiatrists, psychologists and social workers publish a letter in the Times. http://www.lancedodes.com/new-york-times-letter   It said:

“Silence from the country’s mental health organizations…. has resulted in a failure to lend our expertise to worried journalists and members of Congress at this critical time. We fear that too much is at stake to be silent any longer.   Mr. Trump’s speech and actions demonstrate an inability to tolerate views different from his own, leading to rage reactions. His words and behavior suggest a profound inability to empathize. Individuals with these traits distort reality to suit their psychological state, attacking facts and those who convey them (journalists, scientists).

In a powerful leader, these attacks are likely to increase, as his personal myth of greatness appears to be confirmed. We believe that the grave emotional instability indicated by Mr. Trump’s speech and actions makes him incapable of serving safely as president.”

Following that, on April 5, 2017, Rolling Stone magazine (which has had its troubles lately) bucked the Goldwater Rule with an article by Alex Morris titled “Why Trump Is Not Mentally Fit to Be President” and the subtitle “Diagnosing the president was off-limits to experts – until a textbook case entered the White House.”

The article concludes that Trump fits all the criteria for “narcissistic personality disorder,” a formal diagnostic entity in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

In May, psychologist John Gartner, Duty to Warn’s founder, re-entered the fray with an op-ed in USA TODAY.   I guess you could say USA TODAY entered the fray, too.

Mincing no words, Gartner said Trump was “psychotic” and suffered from “malignant narcissism.”   He claimed that more than 53,000 people, including thousands of mental health professionals, had signed a petition stating Trump should be removed under the 25th Amendment because he is “too mentally ill to competently serve.” (Of note: Gartner is the author of In Search of Bill Clinton: A Psychological Biography.)

One politician is also not mincing words about Trump. And he’s a doctor. Virginia Democratic gubernatorial nominee Ralph Northam, a pediatric neurologist, at campaign events and in TV ads routinely calls Trump a “narcissistic maniac.”

“We want to be medically correct,” he recently quipped in a radio interview, according to an article in the Washington Post.

The STAT Analysis

Now, back to the STAT analysis of Trump’s speech patterns and communication style. Veteran science and medical journalist Sharon Begley and her colleagues gathered decades of Trump’s old unscripted on-air interviews and compared them to interviews and unscripted speeches and media Q&A sessions since his inauguration. They then asked experts in neuro-linguistics and cognitive scientists, as well as psychologists and psychiatrists, to carefully compare the clips and samples.

“The differences are striking and unmistakable,” Begley writes. The experts she tapped, from both political parties, agreed there was marked deterioration.

In interviews, even lengthy ones, from the 1980s and 1990s, Begley says Trump more often than not “spoke articulately, used sophisticated vocabulary, inserted dependent clauses into his sentences without losing his train of thought, and strung together sentences into a polished paragraph, which — and this is no mean feat — would have scanned just fine in print.”

By comparison, Trump’s speech in recent interviews is fragmented, even incoherent or disoriented at times, and uses much simpler words. In addition, he frequently repeats the same point, words or phrases and routinely strays into tangential points or unrelated topics.

Begley cites several examples, including this one from an interview with the Associated Press in April 2017:

“People want the border wall. My base definitely wants the border wall, my base really wants it — you’ve been to many of the rallies. OK, the thing they want more than anything is the wall. My base, which is a big base; I think my base is 45 percent. You know, it’s funny. The Democrats, they have a big advantage in the Electoral College. Big, big, big advantage. … The Electoral College is very difficult for a Republican to win, and I will tell you, the people want to see it. They want to see the wall.”

We have all noticed this. Some of us are bothered by it, others not so much. What Begley then brings to the table is a solid discussion of the possible causes of this particular Trump impairment, if indeed it is one. To her credit, she doesn’t speculate on whether this impairment is linked to Trump’s overall mental health, or other possible diagnoses.

Her experts—some clearly with the Goldwater Rule in mind—agreed that the changes in Trump’s speech patterns and language likely reflect cognitive decline. But they differed on the key point of whether that decline is due to “normal aging” or something more serious, even the beginnings of dementia or other neurodegenerative disease.   Some also noted that linguistic decline is commonly triggered by stress, anxiety, frustration, anger, or just plain fatigue and lack of sleep.

As I was writing this piece I happened upon a Q&A interview in TIME magazine with Sir Harold Evans (June 12, 2017 issue, page 60).   An esteemed editor and writer for decades, Evans has written a new book titled Do I Make Myself Clear.   https://en.wikipedia.org/wiki/Harold_Evans

The interview has this interesting exchange (edited slightly for length):

Q: Which presidents have been the least clear in their writing, and where does Donald Trump rank?

A: Donald Trump can actually be very clear. But the thought is zero, virtually.   The real problem with him not the clarity of language.

Q: You talk about the seduction of Trump’s “insistent certainty”….

A: Exactly, It’s very seductive…..Trump has an ability to be clear when he wants to be and is aware surely of the immortality of falsehoods. “We’re going to stop immigration” We’re going to have a wall.”

Evans is not the first to suggest that Trump’s simplistic rhetoric and repetitive speech is quite intentional.   That brings to mind H.L. Mencken’s quip: “No one ever went broke underestimating the intelligence of the American public. Nor has anyone ever lost public office thereby.”

Summing up

The Goldwater Rule makes all kinds of sense—morally, ethically, and legally. But we are in uncharted waters with President Trump on so many levels. At the very least, the mental health community, ethicists, philosophers, media professionals, and legal scholars should engage in a wider discussion of the points raised by the Duty to Warn folks.

At the same time, a serious public debate seems warranted about (a) whether candidates for president should receive a more formal vetting as to their health, including mental health, and (b) whether an age cut-off should be imposed for the presidency.

Yes, I know, both those suggestions may appear shocking, even laughable. But we’ve had two presidents in the past 50 years—Nixon and now Trump—whose mental health (or character, forged in part by possibly unsound mental health, in the case of Nixon) has been called into serious question.

And we’ve had one president—Reagan—who was very likely cognitively impaired in his final years in office.

Research is clear on cognitive decline with age. We may be wiser at 70 or 75 but none of us are as sharp, mentally agile or energetic at that age as we are at 50 or 60. And, recent studies suggest, for a growing number of seniors that decline lies somewhere between the minor deterioration associated with “normal aging” and the more-serious decline of dementia.

Neurologists call this mild cognitive impairment, or MCI. Online sources define MCI as “problems with memory, language, thinking and judgment that are greater than normal age-related changes.”

Of course, none of this means that seniors—with or without MCI—can’t be productive members of society, or continue working. Maybe just not as President of the United States.

Both areas—mental health status and age—together and apart, are tough and fraught subjects. I wouldn’t even hazard a guess as to what public opinion polls would reveal on these subjects, or where a robust public debate would end up.

In fact, it’s quite feasible we’d end up with this tacit or default approach: there’ll always be a risk we’ll get mental and character-challenged bad apples as presidents (or members of Congress or governors) because there’s no way to prevent that in an open democracy like ours, and/or because we think such bad apples reflect society as much as good apples do.

For now, I’m just saying we ought to be having the discussion.

[Addendum: STAT also published a “reporter’s notebook piece by Sharon Begley on May 25 about how her piece on Trump came about.

 

Overdiagnosing Trump

Overdiagnosing Trump

When I first read about neurosyphilis in medical school, I became convinced that Mrs. Thatcher, who I detested intensely because it was fashionable detesting her, had General Paralysis of the Insane. The condition, marked by episodic bouts of temporary insanity, which indicated that the spirochetes were feasting on expensive real estate in the brain, seemed a plausible explanation why she had introduced the retarded Poll Tax.

A little bit of medical knowledge can lead to tomfoolery by the juvenile. I began diagnosing the powerful with medical conditions. I thought the former leader of the Labour Party, Neil Kinnock, who had an odd affect, was both hyperthyroid and hypothyroid – when he spoke he looked myxedematous and when was silent he looked like he had Grave’s Disease. The tacit, but not silent enough, Prince Charles spoke in a tone that seemed a cry for help for acutely thrombosed piles. I also realized that the Prince of Wales –  who is the most compelling evidence for the magical kingdom of elves – wasn’t reducible to a single diagnostic code. Diagnosing Hillary was relatively straightforward. After reading a third of her memoirs, which permanently cured my insomnia, I felt someone had inadvertently given her dextrose without thiamine.

There’s something delightfully empowering, and annoyingly juvenile, about diagnosing the famous with medical conditions. It is also strangely pedagogic. I’ll never forget the symptoms of syphilis, not because I’ve seen patients with them (nor because I have them), but because I’ve templated these symptoms on people who almost certainly don’t suffer from syphilis.

Thus, it’s no surprise that many are keen to diagnose Mr. Trump with a medical condition – my preferred diagnosis would be Kluver Bucy syndrome, but that would expose my juvenile intent. Far removed from childish diagnostic name calling, many serious people seriously believe that Mr. Trump has a neurocognitive condition which is seriously impairing his judgment and decision making.

Analyzing Trump’s speech pattern, experts have questioned what his decline of verbal fluency indicates. Possibly mild cognitive impairment (MCI)? Possibly the first signal of dementia? Possibly normal aging?  STAT News outlines the evidence. STAT has gallantly fought overdiagnosis and overmedicalization. MCI is the mother of overdiagnosed conditions – it’s more capacious than the Pacific Ocean – technically anyone can have it on a bad day, or after opening the 2nd bottle of wine. I hope STAT will do an expose of physician-industry relationships which have lead to overdiagnosis of MCI.

That even Mr. Findlay, a serious journalist with hardly the juvenile disposition that I possess in abundance, has fallen for the medicalization of Trump, begs the question – what gives?

There is, of course, a historical curiosity how pain and disease influence a person’s worldview. Thoreau once said that nothing drives a revolution more forcefully than a man with unfulfilled bowels. Many historians believe that Karl Marx’s hidradenitis suppurativa – painful inflammation of the sweat glands – made him angry about capitalism. Which means that the Bolshevik revolution was conceived, not by the events of Bloody Sunday, but under the smelly arm pits of an unkept Nineteenth Century Londoner.

The analysis of Trump is not historical but in the present and Mr. Trump is certainly no Karl Marx. Even so, there’s little precedence for medicalizing POTUS because of their policies. When Bush Jr. alluded that he spoke to God, no one tried diagnosing him with temporal lobe epilepsy. Even Bill Clinton, the man who once put a preposition on trial, escaped the wrath of DSM.

Why, then, are people so obsessed with giving Mr. Trump an ICD-10 or DSM-5 code?

Many readers will say that conflating Mr. Trump with the flawed, yet genuine leaders that I’ve mentioned is moral relativism. And I’d agree. The Iron Lady was no follower. Bill had several leadership moments, even when he wasn’t alone. Even Bush rose to the occasion – he rose to other occasions when the world might have been better off if he stayed sitting. Even Hillary would, arguably, have been more of a leader than the comically bumbling Trump.

The comically bumbling Trump who could, in a parallel universe, be auditioning for the next Austin Powers, and who seems not to be enjoying his presidency terribly, is the heart of the problem. There’s an incessant attempt at delegitimizing Trump. It was never enough saying “Trump is a joke.” And “Trump is evil” no longer suffices – even though the look on the Pope’s face, when he stood next to Trump resembled the look on Gregory Peck’s face when he saw that his adopted son, Damian, had “666” written on his scalp.

 

 

The medicalization of Trump is part of an emerging phenomenon, thus far innominate, which I’ll call “rational delegitimization,” in which scholars, incredulous of Trump’s behavior, seek biological substrates to delegitimize him. It is an extension of the very legitimate and necessary legitimization of variation we like when we find that the variation has a biological explanation. But this is a very slippery slope.

Researchers have tried to show that conservatives and progressives have different brain structures – apparently, progressives have a larger anterior cingulate gyrus and conservatives have a larger amygdala. I’ll let you guess the abundance of which structure is more desirable.

This type of research can ossify polarization permanently. Already, many believe that their moral high ground shuts debate with opposing worldviews. The last thing you want is for people to believe they have not just the moral, but biological high ground. Tying biology with morality breeds a new class of biological theocrats who make the Ayatollah a libertarian, free love-seeking, cannabis smoker in comparison. Combining tribalism, functional MRI and p <0.05 can spit out BS of a scale one struggles to comprehend.

A colleague of mine hasn’t been herself for a few months. I often put academic blues to the promotion cycle, but she has already made Associate Professor. So, I inquired. With eyes swelling with genuine tears she told me that she was very upset that many “normal” (the air quotes are hers, not mine) people voted Trump.

This gets to the crux of the issue, which is our inability to grasp the broad coastline of what is normal (note absence of air quotes). I said to my colleague, as diplomatically as I could, that she needs to expand her definition of normal – actually, I said she needs to get out more.

It is normal for normal people to disagree about the least worst presidential candidate in 2016. It is normal for normal people to ask of those who disagree with them “how could you be so stupid?” It is normal, though worrying, to shrink the real estate of legitimacy by safe spaces. This is called “having an opinion,” which is what sets us apart from other mammals, notably the duck-billed platypus and, mercifully, the sheep.

The presence or absence of a disease, organic or psychiatric, is conditionally independent of whether someone agrees or disagree with your worldview. To seek biological substrates to delegitimize opposing views risks delegitimizing the already precarious medical sciences. Ideally, normal people politely agree to disagree, but even when they don’t, they’re still normal.

Mr. Trump has a condition which is very prevalent in our society and under diagnosed in 1600 Pennsylvania Avenue. It’s called “ineptness.” It doesn’t have an ICD code, yet. Which is just as well, because if ineptness became a preexisting condition all insurance markets will truly enter an inept death spiral.

History will tell us if Mr. Trump had an unprecedented or, as he put it, “unpresidented” level of ineptness. But even if he does that doesn’t make him diseased. Normal can be aesthetically pleasing, or distasteful. And, for all his faults, and there surely are many, and notwithstanding #covfefe, Trump is probably normal.

About the author

Saurabh Jha is a contributing editor to THCB. He has an abnormally large anterior cingulate gyrus and amygdala

With Amazon Purchase, it’s Time For Whole Foods to Bring Affordability Instead of Gentrification

With Amazon Purchase, it’s Time For Whole Foods to Bring Affordability Instead of Gentrification

On Friday, Amazon purchased upscale grocery and health food chain Whole Foods for $13.4 billion. Business outlets have praised the deal for both sides by noting that Amazon gains the brick-and-mortar presence that it has long sought while Whole Foods gains a major bump in stagnant stock prices. Squeezed by Costco, Target and Walmart’s increasing forays into the organic produce, Whole Foods was forced on the defensive in recent years, making shareholders unhappy.

Now, with the sale to Amazon, Whole Foods gains a second life as part of the world’s largest internet e-commerce company. Already, speculation has begun regarding how Amazon can leverage its technology to streamline Whole Foods’ operations and how Amazon can leverage the massive network of 460 stores in the US, Canada and UK to extend its relatively recent profitable streak.

But what do these obvious business benefits mean for American consumers?

While it will take time to know for sure, it’s probable that Amazon will add Whole Foods products to its AmazonFresh service, available to Amazon Prime members for an additional $14.99 a month. Competition in the American online grocery delivery service space has been unexpectedly fierce in recent years with companies such as FreshDirect and Instacart holding their own against Amazon and likely slowing AmazonFresh’s expansion into additional cities.

By adding Whole Foods products, Amazon will likely be able to entice more consumers into trying AmazonFresh. Both AmazonFresh and Whole Foods already target a traditionally overlapping customer base of affluent professionals so merging the ease-of-use of Amazon’s platform and logistics with Whole Foods robust brand penetration and food supply chain represents a real chance at achieving the retail ideal – a flexible grocery service with similar products both online and in-store.

But there’s one potential issue with such a strategy – pricing. In recent years, Whole Foods’ growth has stalled due to competition but also saturation among affluent consumers. Colloquially known as “Whole Paycheck”, it’s easy to see why when the grocery giant charges nearly double items like the popular New York bodega staple, a chopped cheese sandwich.

That is why it pivoted last year to attract lower-income consumers – to the delight of financial analysts. Evidence of this strategy can be seen most prominently at the corner of 125th Street and Lenox Avenue in Central Harlem where construction on a new Whole Foods is nearly complete in a traditionally underprivileged area.

But the problem with Whole Foods’ brick-and-mortar approach is that it relies too heavily on the forces of gentrification. Because Whole Foods is perceived to be a premium brand, housing prices around their locations tend to skyrocket. This Whole Foods effect means two things – (1) that Whole Foods never really expands its reach beyond residents who can afford the now inflated rents and (2) that Whole Foods never has the incentive to lower prices.

More brick-and-mortar locations and expanded delivery services will do little to help AmazonFresh and Whole Foods expand its customer base if its pricing isn’t brought back down to earth. With its purchase, Amazon has the opportunity to leverage efficiencies to bring prices down prices on groceries for both services.

Not only will this be good for the business by bringing in more customers, it’s good for America. Cities such as New Orleans, Chicago, Atlanta and Memphis have huge problems with food deserts – areas where communities have little to no access to healthy food such as vegetables, meats and dairy products. Approximately 2.3 million people live in low-income areas which are further than one mile from a supermarket with no access to a vehicle and such limited access to fresh food disproportionately affects African-Americans.

This prevalence of food deserts has a direct effect on Americans’ health. Living in a food desert forces people to fill in gaps in their diet with fast food. This spikes rates of obesity and diabetes in these communities – precisely the ones that can least afford to deal with the consequences given the current and potential state of American healthcare.

While not the entire answer to America’s distribution of healthy food, Amazon has the unique opportunity to provide more communities with access– either in-store or online. No retailer, even Walmart, has had such an opportunity to bring necessary goods directly to people before. While consumers shouldn’t begrudge Amazon for making a profit, this profit will also hopefully mean that more Americans get to enjoy readily available, and accessible, grocery options in their neighborhoods rather than just gentrification.

Jason Chung is currently senior researcher and attorney at NYU SPS Sports and Society, in New York. He tweets at @ChungSports

Don’t Underestimate Patients

Don’t Underestimate Patients

I was diagnosed with aggressive but localized prostate cancer at a major Dutch academic hospital. My parameters were PSA 29 or 31, Gleason sum 4 + 4, and stage T2c. Fortunately, there were no detectable distant metastases. The specialist drew a simple image of my urinary tract and told me I was excluded from brachytherapy, which I had never heard of before, because of the size of my prostate. I had to choose between external beam radiotherapy (EBRT) and radical prostatectomy (RP). How on Earth could I choose rationally while knowing so little about prostate cancer? However, I had studied maths and physics and could learn necessary medical science about my condition.

The Dutch healthcare system was privatized in 2006 by a special arrangement between the Health Ministry and the private insurers. This was the first healthcare privatisation in the European Union (EU). The effect of privatisation was, in my opinion, mixed. By the time I was diagnosed I already had much to distrust about the privatisation.

I sought a second opinion in Uppsala Sweden, where I had spent a lot of time as an academic visitor. Its Akademiska Sjukhuset (The Academic Hospital) has an excellent oncology division. I consulted two specialists.

They offered me a treatment that would solve the prostate size problem while being more effective than EBRT or RP alone. The treatment was by then world – class and in use in Norway and America. It is a trimodal technique involving EBRT, High Dose Rate Brachytherapy, androgen deprivation therapy (ADT) before radiotherapy (to make prostate smaller), and ADT during and three years after radiotherapy. The plan would be finalised later. I enjoyed the discussion so much that I decided to move permanently to Uppsala, and I started the treatment.

When I returned to the Netherlands to prepare to move, I ran into the doctor. Using my firm teacher’s voice I asked him why he had rejected me for brachytherapy. I did not tell him I had been in Uppsala. He kept referring to his Guideline but told me nothing else.

I found the guideline titled, ‘Guideline Prostate Carcinoma: Diagnostics And Treatment.’ The guideline made no allowance for my individual predicament.

For example, it stated that most studies of brachytherapy excluded Gleason sum > 6. ​Mine was 8.​ That is, according to this guideline the population for which brachytherapy was considered suitable or unsuitable did not include someone like me.

The guideline said nothing about using ADT to shrink the size of the prostate – again this is a  nuanced consideration about applying the guideline to individual cases. Why did the doctor not think nuance? Are we paying doctors for following guidelines or applying nuance?

The guideline said, “There is insufficient evidence that combining EBRT and brachytherapy for patients with localised cases yields better results [than either alone], at least for low and intermediate risk patients, while the morbidity [toxicity] seems to increase.”

My prostate cancer is high, not low or intermediate, risk. The guideline writers are worried about toxicity. I’m worried about death. How about asking me if I’m willing to take chances with “toxicity”? I did not want a prostatectomy but I did not want to be undertreated. Should I not have been asked how I felt about side – effects?

Why should doctors decide on a treatment plan without involving patients in discussions as to what they find an acceptable post treatment quality of life? This ​is ​done with prostate cancer issues like sexual potency and incontinence, which very many men know about. Why not others, e.g. radiation induced cystitis of bladder (me) and stricture? I fail to see any difference.

The age cut-off of the Dutch guideline for prostate cancer is 65. Yes, you heard right – 65! They were laughing about this in Uppsala.

My case raises a moral problem. Should doctors inform patients about where they can get the most effective treatments, at home or abroad? I was not, yet I did know about free international travel of EU citizens within the Union. Treaties exist concerning medical care of residents of EU country X in EU country Y. They are bilateral agreements. They ought to be used to help save lives.

State and private insurers should set up procedures to send patients abroad. Some are now, but I am convinced that this should be routine and unproblematic. Yet when I asked one of my Dutch doctors about care of prostate cancer in other countries a few days before I left, he replied, ‘we have our own ideas here.’ He did not know about my visit to Uppsala. He imposed his parochial ideas about quality of life on me. So the Dutch medical authorities chose probable death in The Netherlands over probable survival in Uppsala, albeit with reduced quality of life. How was this decided? By some local ethical and/or religious ideas? By cool financial analysis? By arrangements with insurers? Is following Guidelines more important than curing patients?

The choice was mine to make. I believe, were it not for my own initiative and inquiry, I’d have died prematurely from undertreatment.

About the author:

George Berger PhD is a philosopher of science. He lives in Uppsala Sweden. He’s a member of Disabled People Against Cuts, a large independent British group fighting benefit polices concerning ill and disabled people that have harmed many.

Don’t Let Weak Research Influence Policies with Life and Death Consequences

Don’t Let Weak Research Influence Policies with Life and Death Consequences

U.S. health care policies should be based on solid evidence, especially those policies with life-and-death consequences. All too often, though, they are not. Consider the recommendation by congressional advisors that the government should favor basic ambulances with only minimal equipment and less trained staff over advanced ambulances with more life-saving equipment and better trained staff. A poorly controlled study, however, claimed that patients were more likely to die during or after riding in the advanced ambulances than in the basic (but cheaper) ambulances.

Why would “basic” ambulances (with less life-saving equipment and with lesser trained staff) be better than the more advanced ambulances? They probably were not, and we’ll show how the data supporting the benefits of “basic” ambulances are unreliable, and often confuse cause and effect. Worse perhaps, the study offers yet another example of economic research devoid of context generating dubious national policy.

The Study    

Researchers at the University of Chicago and Harvard Medical School used insurance data to examine how well a large sample of Medicare beneficiaries fared after ambulance transport for out-of-hospital emergencies. They compared those sent in basic life support ambulances vs. people transported in advanced life support ambulances.

The results, published in the Annals of Internal Medicine, are of course counterintuitive: patients transported to the hospital in Advanced Life Support ambulances were more likely to die than those riding in the simpler, basic ambulances.

Questioning the Study’s Continuing Impact

The study is continuing to reverberate in research and policy circles. Almost a year after its publication, it was vigorously debated at the prestigious conference of the American College of Emergency Physicians (ACEP). Most emergency medicine leaders there questioned the veracity of the study and wondered about the absence of collaboration with emergency medicine specialists, who are trained in ambulance dispatch decisions that match the severely ill or dying patients with the most effective emergency transport. The emergency physicians also expressed worry that Medicare might reduce reimbursement for advanced ambulances on the basis of this unreliable study.

More troubling, in an recent interview , one national expert, Dr. Howard Mell, worried that the study represented a “ticking time bomb” (personal communication) given the new president’s emphasis on cuts to health care.

Most severely ill Medicare patients are currently transported by advanced life support ambulances, so it would be great if the cheaper ones were better. But there are several reasons why it’s premature for policymakers to act on this finding—yet another untrustworthy study with poor research methods, but much media hype.

The Evidence: Confusing Cause and Effect

First, the study seems to assume that severely ill patients are assigned to either an advanced or a basic ambulance by the flip of a coin. But this is not the case. Policy demands that advanced ambulances are sent to sicker patients, those further from the hospital and those more likely to die on route. It’s not random selection (like gold standard randomized trials); it’s often carefully considered selection.

Second, the study is almost devoid of data on how sick the patients were in each type of ambulance—exactly the sort of information emergency services often consider in assigning advanced life support ambulances in an effort to save critically ill patients.

This study wrongly creates the impression that advanced ambulances cause more deaths. In fact, they transport patients who are already more likely to die.

One large study shows that advanced ambulance teams are twice as likely as basic ambulances to pick up people with respiratory distress, serious breathing conditions, resulting in more deaths. In other words, people who are barely breathing are 100% more likely to get more advanced ambulances, making it appear that advanced ambulances “cause” more deaths when it is the opposite. People who can’t breathe and are more likely to die, are sent advanced ambulances in efforts to save their lives (the very definition of triage).

As can be seen in the above figure, patients transported in advanced ambulances were far more likely to be suffering life-threatening conditions. They were almost twice as likely to have supplemental oxygen, were a third more likely to be admitted to the hospital, and had 12 times the rate of electrocardiograph monitoring. Moreover, only patients in the advanced support ambulances had intravenous lines.

The graph above, likewise illustrates the more severe clinical conditions of patients transported in advanced ambulances. They were a fifth more likely to have very low blood pressure, and a third more likely to have very high blood pressure. They were almost twice as likely to have asthma or emphysema, and almost four times more likely to suffer from respiratory depression.

This is hardly the result of a flip of the coin. Remember also, all of these conditions occurred before hospitalization. All of the advanced ambulance patients were more likely to die from a large number of severe conditions occurring at the time they were picked up. It is virtually impossible to state that the health of patients transported by basic and advanced life support ambulances were the same.

What’s more, basic ambulances are more likely to pick up patients from skilled nursing facilities, where they are used as taxis to move healthy elderly to routine medical procedures—not usually near-death events.

Yet, another problem with the study is that it is correlational: research comparing patients during the same period of time. There is no calculation of any change in (or “effect” on) deaths. This type of design is so weak that the international scientific body that reviews tens of thousands of medical studies (Cochrane) immediately rejects it as evidence—even before examining any other weaknesses.

Not surprisingly, in an online forum, emergency medical technicians who attempt to resuscitate seriously ill patients reacted skeptically to the study’s findings.

One EMT responded, “We don’t send basic life support ambulance to a head-on car crash on a freeway.”

Another stated, “A basic unit probably won’t be activated for an elderly person who’s difficult to arouse, complaining of chest pain.”

And another: “… if you are receiving an advanced life support ambulance from the start, it is because the dispatch center infers your situation is severe enough to require ALS [an advanced life support] ambulance. So you are already more likely to experience poorer outcomes if you are being sent an ALS [the advanced life support] ambulance.”

Despite these limitations, the article’s authors proclaimed the salutary implications of their study, even calculating that the country would save many millions by abandoning more expensive advanced ambulances.

And, as usual, media outlets, including the Washington Post, trumpeted the findings under exaggerated headlines: “Need an ambulance? Why you might not want the more sophisticated version.”

Health policies with life-and-death consequences deserve strong evidence. At present, too much of the research in this field is weak. The National Institutes of Health have identified a disturbing phenomenon, the non-reproducibility of science. Unreliable studies confuse doctors, scientists, local politicians, and policymakers. They can also harm patients. Less expensive medical care is sometimes more effective, wise and more humane. But if the federal government overgeneralizes that message from unreliable studies on emergency care, we may see fewer patients survive their journeys to the hospital. More generally, we must not let weak research dictate policy that appears to be politically attractive but is foolish or harmful.

Stephen Soumerai is Professor of Population Medicine and teaches research methods at Harvard Medical School and the Harvard Pilgrim Health Care Institute.

Professor Ross Koppel teaches research methods and statistics in the Sociology department at the University of Pennsylvania and is a Senior Fellow at the Leonard Davis Institute (Wharton) of Health Economics. He is also affiliate professor of medicine at Penn’s medical school

Medical Associations Non-Pulsed by Trump’s Withdrawal From the Paris Accord

Medical Associations Non-Pulsed by Trump’s Withdrawal From the Paris Accord

By DAVID INTROCASO

Climate change, or changes in weather extremes, are having an increasingly harmful effect on human health. Last year, the 20th consecutive year in which the US experienced above average annual temperatures, saw increasing instances of heat related ailments and deaths and increases in related exacerbations of chronic, including cardiovascular, cerebrovascular, respiratory and mental health, conditions as well as the spread of climate change-related food pathogens and vector borne diseases, most recently Zika.

One study estimated that absent any adaptation to climate change or disruption we will see an increase of 2,000 to 10,000 deaths annually in over 200 US cities. Worldwide, the WHO estimates 800,000 die prematurely each year from urban air pollution stemming from burning coal, oil and gasoline. Not surprisingly, those disproportionately paying the climate penalty are children, pregnant women, the elderly, the disabled, minorities and the poor. Half of those killed by Hurricane Katrina (responsible for almost half of hurricane related deaths over the past 50 years) were over 75 and black adult mortality was upwards of four times higher than for whites. Half of Hurricane Sandy deaths were of those over 65.

When President Trump announced the US would withdraw from the 2015 Paris climate accord, signed by 195 nations, the news was met with widespread criticism. The president’s own Secretary of State, and former Exxon CEO, Rex Tillerson, opposed the decision.

Ironically, on May 11, Tillerson signed the Fairbanks Declaration that stressed the importance of reversing Arctic warming that is twice the rate of the global average and has caused, in part, the disappearance of 40 percent of summer Arctic ice. Twenty-five major US companies including Apple, GE, Goldman Sachs, Google, IBM, Microsoft along with energy giants National Grid, Pacific Gas and Electric, Peabody Energy and Shell, made known their opposition to withdrawal in full page New York Times and Wall Street Journal ads.

A 2015 study by Citigroup estimated climate change would cost the US at least $44 trillion in lost GDP over the next five decades.   Al Gore called the decision “reckless” and “indefensible.” Bill McKibben, the founder of 350.org., not surprisingly called it an “incredibly stupid decision,” and wrote the decision undercuts civilization’s chances of survival. Tesla and Space X CEO, Elon Musk, and others, resigned from several presidential councils. Among American voters nearly 70 per cent, including a majority in all 50 states, support the Paris accord.

Because there has always been a clear link between climate, weather and health, one would think the professional medical community would have led the chorus of condemnation. It has not. If you search the American Medical Association’s website, the AMA has had nothing to say about the president withdrawing from the Paris accord. The American Hospital Association (AHA) and the Federation of American Hospitals (FAH) websites also make no mention of Trump’s decision. The same is true for the American College of Physicians (ACP), the American Academy of Pediatrics (AAP), the American Geriatric Society (AGS), the American Diabetes Association (ADA), the American Heart Association (AHA), the American Lung Association (ALA) as well as, for example, the American Association for People With Disabilities (AAPD), the National Association of Medicaid Directors (NAMD), the Association of Health Plans (AHIP), and numerous other related organizations. It’s worth noting as well, if these organizations received their health-related news entirely from health policy-dedicated media they would be unaware of the president’s decision. Inside Health Policy, for example, has not written a single related article in the week following the White House’s decision.

The non-response by the nation’s leading medical trade and professional associations is sadly not surprising. They were equally indifferent when the president on March 28 signed an Executive Order (EO) that the White House press shop stated, “stops Obama’s war on fossil fuels.” Among other things, the EO allows the EPA to “review” President Obama’s “Clean Power Plan” initiative aimed at reducing carbon pollution or greenhouse gasses from coal plants by 32 percent of 2005 levels by 2030. (Carbon dioxide from fossil fuel use accounts for nearly 60 percent of greenhouse gasses.) The EO lifts a 14-month moratorium on new coal leases on federal lands and it eliminates guidance that climate considerations be factored into environmental reviews under the National Environmental Policy Act (NEPA). The EO is particularly disturbing when you realize the fossil fuel industry already has five times more carbon resources in its reserves than most believe is safe to burn. Last April when the Obama administration released a 400-page report, that included 150 pages of references, on the “impacts of climate change on human health,” a report drafted over three years by scientists at the EPA, NASA, NOAA, DHHS, DoD, the USDA and others, again, the AMA, the AHA and others had nothing to say.

The organization that has been vocal in addressing climate change, the outlier, is the American Public Health Association (APHA). It’s Executive Director, Georges Benjamin, immediately condemned Trump’s June 1 decision stating it “has disastrous consequences for human health.” When the CDC abruptly canceled a three-day climate and health meeting this past winter, the APHA along with others, none of whom were medical associations, stepped up and sponsored an abbreviated, one-day meeting on February 16 at the Carter Center in Atlanta. Among other programming, the APHA has since 2010 produced a climate change webinar series. The APHA, along with 40, moreover non-medical, organizations, declared 2017 as “the year of climate change and health,” in an effort to increase climate change awareness and mobilize action to protect public health.

The APHA has also partnered with 10 other medical societies, including three named above, i.e., the AAP, ACP and AGA, to recently form the Medical Society Consortium on Climate and Health. The consortium, publicly launched three months ago, did issue a press release in response to the president’s June 1 decision. It stated tepidly withdrawing from the Paris accord is “the wrong choice that puts Americans at unnecessary risk.” (To it’s credit the ACP released last year a “climate change and health” position paper that stated, albeit halfheartedly, “physicians . . . are encouraged to advocate for climate change adaptation and mitigation policies and communicate about the health co-benefits of addressing climate change.”)   The consortium pledges to advocate for energy efficiency and the transition to clean, renewable energy sources. Since the health sector is the largest energy consumer after the food industry, there is ample opportunity for the industry to go green. This is the mission of the Health Care Climate Council. One member, Kaiser Permanente, stated last year the organization will be carbon neutral by 2020 and has predicted by 2025 it will be carbon net positive. Another member, Gunderson Lutheran, has instead chosen to pursue a renewable energy strategy. Its largest alternative energy effort is a biomass boiler. However, burning biological materials for energy can emit as much or more pollutants as burning coal.

The US, after China, is the second largest greenhouse gas polluter, emitting over 6,600 million metric tons of green house gasses in 2015. Historically, the US is responsible for 27 percent of global CO2 emissions. We treat the atmosphere, the thin blue band that surrounds the planet, as an open sewer. That it appears we’ll continue to do so, and perhaps embolden others to do the same, is on balance not the concern of medical community. The greatest existential threat to our survival, our children and their children and the medical community is unwilling to raise its voice.

Today’s temperature in DC is 94 degrees, or 11 degrees above normal.

Being Human

Being Human

This is the most difficult blog post I’ve ever had to write. Almost 3 months ago, my sister passed away unexpectedly. It’s too painful to talk about the details. We were extremely close and because of that the loss is even harder to cope with.

The story I want to tell you today is about what’s happened since that day and the impact it’s had on how I view the world. In my work, I spend considerable amounts of time with all sorts of technology, trying to understand what all these advances mean for our health. Looking back, from the start of this year, I’d been feeling increasingly concerned by the growing chorus of voices telling us that technology is the answer for every problem, when it comes to our health. Many of us have been conditioned to believe them. The narrative has been so intoxicating for some.

Ever since this tragedy, it’s not an app, or a sensor or data that I turned to. I have been craving authentic human connections. As I have tried to make sense of life and death, I have wanted to be able to relate to family and friends by making eye contact, giving and receiving hugs and simply just being present in the same room as them. The ‘care robot’ that had arrived from China this year as part of my research into whether robots can keep us company, remains switched off in its box. Amazon’s Echo, the smart assistant with a voice interface that I’d also been testing a lot also sits unused in my home. I used it most frequently to turn the lights on and off, but now I prefer walking over to the light switch and the tactile sensation of pressing the switch with my finger. One day last week, I was feeling sad, and didn’t feel like leaving the house, so I decided to try putting on my Virtual Reality (VR) headset, to join a virtual social space. I joined a virtual computer generated room where it was sunny and in someone’s back yard for a BBQ, I could see their avatars, and I chatted to them for about 15 minutes. After I took off the headset, I felt worse.

There have also been times I have craved solitude, and walking in the park at sunrise on a daily basis has been very therapeutic.

Increasingly, some want machines to become human, and humans to become machines. My loss has caused me to question these viewpoints. In particular, the bizarre notion that we are simply hardware and software that can be reconfigured to cure death. Recently, I heard one entrepreneur believe that with digital technology, we’ll be able to get rid of mental illness in a few years. Others I’ve met believe we are holding back the march of progress by wanting to retain the human touch in healthcare. Humans in healthcare are an expensive resource, make mistakes and resist change. So, is the answer just to bypass them? Have we truly taken the time to connect with them and understand their hopes and dreams? The stories, promises and visions being shared in Digital Health are often just fantasy, with some storytellers (also known as rock stars) heavily influenced by Silicon Valley’s view of the future. We have all been influenced on some level. Hope is useful, hype is not.

We are conditioned to hero worship entrepreneurs and to believe that the future the technology titans are creating, is the best possible future for all of us. Grand challenges and moonshots compete for our attention and yet far too often we ignore the ordinary, mundane and boring challenges right here in front of us.

I’ve witnessed the discomfort many have had when offering me their condolences. I had no idea so many of us have grown up trained not to talk about death and healthy ways of coping with grief. When it comes to Digital Health, I’ve only ever come across one conference where death and other seldom discussed topics were on the agenda, Health 2.0 with their “unmentionables” panel. I’ve never really reflected upon that until now.

Some of us turn to the healthcare system when we are bereaved, I chose not to. Health isn’t something that can only be improved within the four walls of a hospital. I don’t see bereavement as a medical problem. I’m not sure what a medical doctor can do in a 10 minute consultation, nor have I paid much attention to the pathways and processes that scientists ascribe to the journey of grief. I simply do my best to respond to the need in front of me and to honour my feelings, no matter how painful those feelings are. I know I don’t want to end up like Prince Harry who recently admitted he had bottled up the grief for 20 years after the death of his mother, Princess Diana, and that suppressing the grief took him to the point of a breakdown. The sheer maelstrom of emotions I’ve experienced these last few months makes me wonder even more, why does society view mental health as a lower priority than physical health? As I’ve been grieving, there are moments when I felt lonely. I heard about an organisation that wants to reframe loneliness as a medical condition. Is this the pinnacle of human progress, that we need medical doctors (who are an expensive resource) to treat loneliness? What does it say about our ability to show compassion for each other in our daily lives?

Being vulnerable, especially in front of others, is wrongly associated with weakness. Many organisations still struggle to foster a culture where people can truly speak from the heart with courage. That makes me sad, especially at this point. Life is so short yet we are frequently afraid to have candid conversations, not just with others but with ourselves. We don’t need to live our lives paralysed by fear. What changes would we see in the health of our nation if we dared to have authentic conversations? Are we equipped to ask the right questions?

As I transition back to the world of work, I’m very much reminded of what’s important and who is important. The fragility of life is unnerving. I’m so conscious of my own mortality, and so petrified of death, it’s prompted me to make choices about how I live, work and play. One of the most supportive things someone has said to me after my loss was “Be kind to yourself.” Compassion for one’s self is hard. Given that technology is inevitably going to play a larger role in our health, how do we have more compassionate care? I’m horrified when doctors & nurses tell me their medical training took all the compassion out of them or when young doctors tell me how they are bullied by more senior doctors. Is this really the best we can do?

I haven’t looked at the news for a few months and immersing myself in Digital Health news again makes me pause. The chatter about Artificial Intelligence (AI), where commentaries are at either end of the spectrum, almost entirely dystopian or almost entirely utopian, with few offering balanced perspectives. These machines will either end up putting us out of work and ruling our lives or they will be our faithful servants, eliminating every problem and leading us to perfect healthcare. For example, I have a new toothbrush that says it uses AI, and it’s now telling me to go to bed earlier because it noticed I brush my teeth late at night. My car, a Toyota Prius, which is primarily designed for fuel efficiency scores my acceleration, braking and cruising constantly as I’m driving. Where should my attention rest as I drive, on the road ahead or on the dashboard, anxious to achieve the highest score possible? Is there where our destiny lies? Is it wise to blindly embark upon a quest for optimum health powered by sensors, data & algorithms nudging us all day and all night until we achieve and maintain the perfect health score?

As more of healthcare moves online, reducing costs and improving efficiency, who wins and who loses? Recently, my father (who is in his 80s) called the council as he needed to pay a bill. Previously, he was able to pay with his debit card over the phone. Now they told him it’s all changed, and he has to do it online. When he asked them what happens if someone isn’t online, he was told to visit the library where someone can do it online with you. He was rather angry at this change. I can now see his perspective, and why this has made him angry. I suspect he’s not the only one. He is online, but there are moments when he wants to interact with human beings, not machines. In stores, I always used to use the self service checkouts when paying for my goods, because it was faster. Ever since my loss, I’ve chosen to use the checkouts with human operators, even if it is slower. Earlier this year, my mother (in her 70s) got a form to apply for online access to her medical records. She still hasn’t filled in it, she personally doesn’t see the point. In Digital Health conversations, statements are sometimes made that are deemed to be universal truths. Every patient wants access to their records, or that every patient wants to analyse their own health data. I believe it’s excellent that patients have the chance of access, but let’s not assume they all want access.

Diversity & Inclusion is still little more than a buzzword for many organisations. When it comes to patients and their advocates, we still have work to do. I admire the amazing work that patients have done to get us this far, but when I go to conferences in Europe and North America, the patients on stage are often drawn from a narrow section of society. That’s assuming the organisers actually invited patients to speak on stage, as most still curate agendas which put the interests of sponsors and partners above the interests of patients and their families. We’re not going to do the right thing if we only listen to the loudest voices. How do we create the space needed so that even the quietest voices can be heard? We probably don’t even remember what those voices sound like, as we’ve been too busy listening to the sound of our own voice, or the voices of those that constantly agree with us.

When it comes to the future, I still believe emerging technologies have a vital role to play in our health, but we have to be mindful in how we design, build and deploy these tools. It’s critical we think for ourselves, to remember what and who are important to us. I remember that when eating meals with my sister, I’d pick up my phone after each new notification of a retweet or a new email. I can’t get those moments back now, but I aim to be present when having conversations with people now, to maintain eye contact and to truly listen, not just with my ears, and my mind, but also with my heart. If life is simply a series of moments, let’s make each moment matter. We jump at the chance of changing the world, but it takes far more courage to change ourselves. The power of human connection, compassion and conversation to help me heal during my grief has been a wake up call for me. Together, let’s do our best to preserve, cherish and honour the unique abilities that we as humans bring to humanity.

Thank You for listening to my story.