health – Renaissance Guy

Walking Down Main Street, USA

I was at Disney World recently. I’ve been to Disney world many, many times over the last decade and a half. Not that long in the scheme of things, I grant you, but long enough to have an impression and an opinion on how things ought to be. Enough to recognize the difference between when Disney lives up to their advertising, and when it falls short. This last trip, it seemed to fall short.

Unlike other times where some catastrophe has wrecked part of my trip, there wasn’t a singular issue. Rather, it was the collective effect of many little issues. Things like “Bell Services was slow” or “the app was buggy” or “there weren’t enough servers working the kiosks.” Little annoyances that, individually excusable, collectively undermine the experience. For another vacation, I might not even mention them. After all, these things happen. But Disney advertises itself as being a cut above the rest precisely because it supposedly smooths these issues over through its trademark pixie dust and monopolistic panopticon of an area the size of Manhattan.

The blame, according to people who follow Disney religiously, lies with the new executives. In trying to squeeze more profit from the parks, they have stripped things down to the bare bones. Cast members are overworked, overstretched, and underpaid, and the result is burnout and absenteeism. Thus, the usual layer of pixie dust becomes a bit spottier. It’s a compelling story, which is part of why I doubt it. It’s a little too quaint, a little too storybook, with a simple villain making bad choices, to explain systemic breakdowns.

Of course, that doesn’t make the story untrue. Disney has been cutting costs. Like any large institution, there is a measure of redundancy within the organization, at which the new executives seem to be taking aim. The new thinking seems to be that theme parks can still sell merchandise without needing a gift shop at every ride, so a lot of shops are being closed and the workers reassigned. But what happens when you keep cutting? The rides still function, but the lines are longer. The cast members, who are covering more people, are just a little less bubbly. Luggage takes a little longer to arrive. Food is just a little less fresh. The shelves aren’t restocked as quickly.

But if the answer is Disney’s CEOs, why is the same true everywhere across the country? If the reason for so many shops at Disney’s Hollywood Studios being closed is Disney corporate strategy, why are shops closing in my hometown? Why are the ingredients at my local grocery store less fresh, and the mail running late, and the store shelves restocking so slowly? You could say something like “supply chain issues” or “worker shortages” but really this only pushes the problem back a step. Why is the supply chain struggling now? Where have all the workers gone?

What seems more remarkable is that no one wants to mention the obvious answer. We’re in the midst of a pandemic that killed more than a million Americans before many states just stopped counting. Millions more have been sickened, and are unable to work to the same capacity. Others are restricted from working in order to support people in the former group. And this is only the disruption to the United States, not even touching the dislocation caused by disruption to global supply chains and migration.

The idea that society- any society -can shrug off upwards of a million excess deaths and millions more disabled, without any kind of social or economic disruption, is a fantasy far beyond anything at Disney World. The idea that workers will be just as eager to compete for the same wages, despite the increased danger of infectious disease, coupled with the pressure of having to cover for sickened or dead colleagues, likewise ignores the basic tenets of supply and demand. When this happened during the bubonic plague, it was the beginning of the end of feudalism, as high-demand workers gained more leverage and began to upend traditional hierarchies. The decades after the 1918 Influenza Pandemic were a high point of labor unrest and economic turmoil in the United States, which only began to dissipate after the New Deal fundamentally restructured the American economy.

Disney continues, as it long has, to be a microcosm of American society at large. Price hikes, staff shortages, shorter business hours, longer lines, are all making themselves known. And likewise, some of the early attempts to grapple with the issue are on display. In response to a more competitive labor market, in addition to tightening time off policies, Disney has been forced to look to new demographics, expanding and accelerating its college recruitment program. At the same time, since it cannot afford to lose the talent it has, the company has been compelled to become more inclusive in its rhetoric.

Which, if you consider the ongoing spat between the right wing Florida state government and Disney, is hilarious. It is the head-in-the-sand public health policies, coupled with xenophobic protectionist immigration controls that have pushed Disney to embrace a more liberal political stance to attract talent. If this pattern ripples out to the wider American economy, and without aggressive government intervention in the labor market and public health, it almost certainly will, it will be a reversal of fortunes worthy of the Disney storytelling tradition.

Real Men Aren’t Scared of Needles

Since most of my readers access this site from countries where the COVID-19 vaccine is now available, I’m here to remind you to get vaccinated when it’s your turn. If you’re over twelve in the United States, you are eligible now. While there are many things in life that can be safely postponed or procrastinated, this isn’t one of them. Getting as many people vaccinated as quickly as possible is humanity’s last best chance to quash this virus before it becomes endemic, which would make it impossible to go back to normal.

You’ve probably already heard this argument from better qualified sources than me. And let’s be real, if you haven’t listened to epidemiological statistics or long term morbidity case studies coming from the CDC, you have no reason to listen to them coming from me. So instead, I’m going to present an argument that you probably won’t see on a prime time TV spot any time soon.

You should get the vaccine because getting the virus will ruin your sex life.
I mean, you should also get it because the virus might kill you, or kill other people, or leave you unable to climb stairs, and so on. But if those stories haven’t convinced you already, clearly you have a different set of priorities. So if you need a better reason than your own survival: you should get vaccinated because more and more COVID-19 survivors are developing sexual dysfunction, in particular male erectile dysfunction. Not just from running out of breath or getting tired, either, but from the virus itself being present long after acute infection phase. Tissue samples confirm the presence of COVID-19 spike proteins obstructing normal arousal mechanisms.

Don’t take my word for it. The pilot study is open access, and not that long to read by the standards of journal articles. Yes, there is some medical jargon, and there’s the usual amount of carefully worded and qualified statements saying that more study is needed, but the data speaks for itself. It’s incredibly obvious, isn’t it? A novel virus is introduced into our precious bodily fluids without the knowledge of the individual, certainly without any choice. Luckily our scientists are able to interpret the resulting loss of essence correctly.

There are obviously public health implications in these findings that viral particles are lingering in certain tissues and obstructing function after the acute infectious period. But the American public has demonstrated in its actions that it doesn’t really follow the nuance of public health, or scientific studies, or systemic issues in general. The only people who care about things like disability adjusted life expectancy or long term national stability are over-educated bleeding-heart know-it-alls. On the other hand, protecting one’s manhood from the virus’s attempt to sap and impurity our precious bodily fluids is as American as apple pie.

World Health Day

The following message is part of a campaign to raise public awareness and resources in light of the global threat posed by COVID-19 on World Health Day. If you have the resources, please consider contributing in any of the ways listed at the end of this post. Remember to adhere to current local health guidelines wherever you are, which may differ from those referenced in this post.

Now that the world has woken up to the danger that we face in the Covid-19 pandemic, and world leaders have begun to grapple with the problem in policy terms, many individuals have justifiably wondered how long this crisis will last. The answer is, we don’t know. I’m going to repeat this several times, because it’s important to come to terms with this. For all meaningful purposes, we are living through an event that has never happened before. Yes, there have been pandemics this bad in the long ago, and yes, there have been various outbreaks in recent memory, but there has not been a pandemic which is as deadly, and as contagious, which we have failed to contain so spectacularly, recently enough to use it is a clear point of reference. This means that every prediction is not just speculation, but speculation born of an imperfect mosaic.

Nevertheless, it seems clear that unless we are willing to accept tens of millions of deaths in every country, humanity will need to settle in for a long war. With the language of the US President and Queen Elizabeth, the metaphor is apt. Whether “long” may mean a few months, or into next year will depend on several factors, among them whether a culture which has for many decades been inculcated with the notion of personal whimsy and convenience is able to adapt to collective sacrifice. The longer we take to accept the gravity of the threat, the weaker our response will be, and the longer it will take us to recover. Right now all of humanity face a collective choice. Either we will stubbornly ignore reality, and pay the price with human tragedy of hitherto-fore unimaginable proportions, and repercussions for decades to come, or we will listen to experts and hunker down, give support to those who need it, and help each other through the storm.

For those who look upon empty streets and bare shelves and proclaim the apocalypse, I have this to say: it is only the apocalypse if we make it such. Granted, it is conceivable that if we lose sight of our goals and our capabilities, either by blind panic or stubborn ignorance, we may find the structures of our society overwhelmed, and the world we know may collapse. This is indeed a possibility, but a possibility which it is entirely within our collective capacity to avoid. The data clearly shows that by taking care of ourselves at home, and avoiding contact with other people or surfaces, we can slow the spread of the virus. With the full mobilization of communities, we can starve the infection of new victims entirely. But even a partial slowing of cases buys us time. With that most valuable of currencies, we can expand hospital capacity, retool our production, and focus our tremendous scientific effort towards forging new weapons in this fight.

Under wartime pressure, the global scientific community is making terrific strides. Every day, we are learning more about our enemy, and discovering new ways to give ourselves the advantage. Drugs which prove useful are being deployed as fast as they can be produced. With proper coordination from world leaders, production of these drugs can be expanded to give every person the best fighting chance should they become sick. The great challenges now are staying the course, winning the battle for production, and developing humanity’s super weapon.

Staying the course is fairly simple. For the average individual not working essential jobs, it means staying home, avoiding contact as much as possible, and taking care to stay healthy. For communities and organizations, it means encouraging people to stay at home by making this as easy as possible. Those working essential jobs should be given whatever resources they need to carry on safely. Those staying at home need to have the means to do so, both logistically and psychologically. Logistically, many governments are already instituting emergency financial aid to ensure the many people out of work are able to afford staying home, and many communities have used volunteers or emergency workers such as national guard troops to support deliveries of essentials, in order to keep as many people as possible at home. Psychologically, many groups are offering online activities, and many public figures have taken to providing various forms of entertainment and diversion.

Winning the battle for production is harder, but still within reach. Hospitals are very resource intensive at the best of times. Safety in a healthcare setting means the use of large amounts of single-use disposable materials, in terms of drugs and delivery mechanisms, but also personal protective equipment such as masks, gowns, and gloves. If COVID-19 is a war, ventilators are akin to tanks, but PPE are akin to ammunition. Just as it is counterproductive and harmful to ration how many bullets or grenades a soldier may need to use to win a battle, so too is it counterproductive and harmful to insist that our frontline healthcare workers make do with a limited amount of PPE.

The size and scope of the present crisis, taken with the amount of time we have to act, demands a global industrial mobilization unprecedented during peacetime, and unseen in living memory. It demands either that individuals exhibit self discipline and a regard for the common good, or central authorities control the distribution of scarce necessities. It demands that we examine new ways of meeting production needs while minimizing the number of people who must be kept out at essential jobs. For the individual, this mobilization may require further sacrifice; during the mobilization of WWII, certain commodities such as automobiles, toys, and textiles were unavailable or out of reach. This is the price we paid to beat back the enemy at the gates, and today we find ourselves in a similar boat. All of these measures are more effective if taken calmly in advance by central government, but if they are not they will undoubtedly be taken desperately by local authorities.

Lastly, there is the challenge of developing a tool which will put an end to the threat of millions of deaths. In terms of research, there are several avenues which may yield fruit. Many hopes are pinned on a vaccine, which would grant immunity to uninfected, and allow us to contain the spread without mass quarantine. Other researchers are looking for a drug, perhaps an antiviral or immunomodulator which might make COVID-19 treatable at home with a pill, much like Tamiflu blunted the worst of H1N1. Still others are searching for antibodies which could be synthesized en masse, to be infused to the blood of vulnerable patients. Each of these leads requires a different approach. However, they all face the common challenge of not only proving safety and effectiveness against COVID-19, but giving us an understandable mechanism of action.

Identifying the “how and why” is not merely of great academic interest, but a pressing medical concern. Coronaviruses are notoriously unstable and prone to mutation; indeed there are those who speculate that COVID-19 may be more than one strain. Finding a treatment or vaccine without understanding our enemy exposes us to the risk of other strains emerging, undoing our hard work and invalidating our collective sacrifices. Cracking the COVID-19 code is a task of great complexity, requiring a combination of human insight and brilliance, bold experimentation, luck, and enormous computational resources. And like the allied efforts against the German enigma, today’s computer scientists have given us a groundwork to build off.

Unraveling the secrets of COVID-19 requires modeling how viral proteins fold and interact with other molecules and proteins. Although protein folding follows fairly simple rules, the computational power required to actually simulate them is enormous. For this, scientists have developed the Folding@Home distributed computing project. Rather than constructing a new supercomputer which would exceed all past attempts, this project aims to harness the power of unused personal computers in a decentralized network. Since the beginning of March, Folding@Home has focused its priorities on COVID-19 related modeling, and has been inundated with people donating computing power, to the point that they had to get help from other web services companies because simulations being completed faster than their web servers could assign them.

At the beginning of March, the computing power of the entire project clocked in at around 700 petaflops, FLOPS being a unit of computing power, meaning Floating Point Operations Per Second. During the Apollo moonshot, a NASA supercomputer would average somewhere around 100,000 FLOPS. Two weeks ago, they announced a new record in the history of computing: more than an exaflop of constant distributed computing power, or 10^18 FLOPS. With the help of Oracle and Microsoft, by the end of March, Folding@Home exceeded 1.5 Exaflops. These historic and unprecedented feats are a testament to the ability of humanity to respond to a challenge. Every day this capacity is maintained or exceeded brings us closer to breaking the viral code and ending the scourge.

Humanity’s great strength has always lay in our ability to learn, and to take collective action based on reason. Beating back COVID-19 will entail a global effort, in which every person has an important role to play. Not all of us can work in a hospital or a ventilator factory, but there’s still a way each of us can help. If you can afford to donate money, the World Health Organization’s Solidarity Fund is coordinating humanity’s response to the pandemic. Folding@Home is using the power of your personal computers to crack the COVID-19 code. And if nothing else, every person who stays healthy by staying home, washing hands, wearing homemade masks and keeping social distance is one less person to treat in the ICU.

What is a Coronavirus, anyway?

I had about come to the conclusion not to write anything on the current crisis. This was because I am not an expert. There are plenty of experts, and you should listen to them over me, and I didn’t want to detract from what they’re saying by adding my own take and spin. I also didn’t want to write something because, in five attempts so far, every time I’ve sat down to write something out, double checking my sources and cross referencing my information, the situation has changed so as to render what I was about to say outdated and irrelevant, which is incredibly frustrating. The last thing I want to do is give advice contrary to what’s being said.

But it looks like we might be heading towards a situation where the advice is stabilizing, if only because when the advice is “shut down everything”, you can’t really escalate that. And the data suggests that we are moving towards a long war here. It’s hard to say, but I’ve seen reports with numbers ranging from a few weeks, to eighteen months. And whether we manage to skate by lightly after a few weeks at home, or whether the first two years of the 2020s go down in history akin to the time of the Bubonic Plague, we need to start understanding the problems with which we find ourselves dealing in a long term context. Before I delve into what’s going on, and what seems likely to happen, I’m going to spend a post reviewing terminology.

I wasn’t going to die on this hill, but since we’ve got time, I’ll mention it anyway. Despite begrudgingly ceding to the convention myself, I don’t like calling this “Coronavirus”. That’s not accurate; Coronavirus is not the name of a virus. The term refers to a family of viruses, so named for protein chains which resemble the outermost layer of the surface of the sun. You know, the spiky, wavy bit that you would add to the picture after coloring in the circle. There are a lot of viruses that fit this description, to the point that the emoji for virus (ie: 🦠 ) could be said to be a generic Coronavirus. In addition to a number of severe respiratory illnesses, such as SARS, and now COVID-19, Coronaviruses also cause the common cold.

They’re so common, we usually don’t bother naming them unless there’s something unusual about them. The World Health Organization was a bit slow to come out with its name for this one; and in the interim the media ran with the word they had. Despite my instinct, I’m not going to tell you you need to get up and change everything you’re saying and remove posts where you said Coronavirus, just be aware of the distinction. We’ve gotten to a point in social discourse where the distinction is academic, the same way everyone understands that “rodent problem” refers to rats or mice rather than beavers. But do be aware that if you’re reading scientific journals, if it doesn’t specify, it’s as likely that that they’re referring to the common cold as COVID-19.

The term COVID-19 is designated by the World Health Organization, short for COronaVIrus Disease, 2019. WHO guidelines are explicitly crafted to design names which are short, pronounceable, and sufficiently generic so as to not “incite undue fear”. These guidelines specifically prohibit using occupational or geographic names, for both ethical and practical reasons. Ethically, calling a disease specific to an area or people-group, even when it doesn’t imply blame, can still create stigma. Suppose a highly infectious epidemic was called “Teacher’s Disease”, for instance. Suppose for the sake of this that teachers are as likely to be carriers as everyone else, but the first confirmed case was a teacher, so everyone just rolls with that.

Even if everyone who uses and hears this term holds teachers completely blameless (not that they will; human psychology being what it is, but let’s suppose), people are still going to change their behaviors around teachers. If you heard on the news that Teacher’s Disease was spreading and killing people around the world, would you feel comfortable sending your kids to school? What about inviting your teacher friend over while your grandmother is staying with you? Would you feel completely comfortable sitting with them on the bus? Maybe you would, because you’re an uber-mind capable of avoiding all biases, but do you think everyone else will feel the same way? Will teachers be treated fairly in this timeline, by other people and society? And perhaps more crucially, do you think teachers are likely to single themselves out for treatment knowing that they’ll have this label applied to them?

There are other practical reasons why using geographic or occupational names are counterproductive. Even if you have no concern for stigma against people, these kinds of biases impact behavior in other ways. For instance, if something is called Teacher’s Disease, I might imagine that I, as a student, am immune. I might ignore my risk factors, and go out and catch the virus, or worse still, I might ignore symptoms and spread the virus to other people. I mean, really, you expect me, a healthy young person, to cancel my spring break beach bash because of something from somewhere else, which the news says only kills old timers?

You don’t have to take my word for it either, or even the word of The World Health Organization. You can see this play out through history. Take the Flu Pandemic of 1918. Today, we know that the virus responsible was H1N1, and based on after the fact epidemiology, appeared first in large numbers in North America. Except, it wasn’t reported due to wartime censorship. Instead, it wouldn’t hit the press until it spread to Europe, to neutral Spain, where it was called Spanish Flu. And when the press called it that, the takeaway for most major governments was that this was a Spanish problem, and they had bigger issues than some foreign virus. The resulting pandemic was the worst in human history.

I am not going to tell you what words you can or can’t use. Ours is a free society, and I have no special expertise that makes me uniquely qualified to lecture others. But I can say, from experience, that words have power. The language you use has an impact, and not always the impact you might intend. At times like this we all need to be mindful of the impact each of us has on each other.

Do your part to help combat stigma and misinformation, which hurt our efforts to fight disease. For more information on COVID-19, visit the Centers for Disease Control and Prevention webpage. To view the specific guidelines on disease naming, go to the World Health Organization.

This Was A Triumph

Today I am happy to announce a new milestone. As of today I have received from my manufacturer the authorization code to initiate semi-closed loop mode on my life support devices. This means that for the first time, my life support devices are capable of keeping me alive for short periods without immediate direct human intervention. For the first time in more than a decade, it is now safe for me to be distracted by such luxuries as homework, and sleep. At least, for short periods, assuming everything works within normal parameters.

Okay, yes, this is a very qualified statement. Compared to the kind of developments which are daily promised by fundraising groups and starry eyed researchers, this is severely underwhelming. Even compared solely to technologies which have already proven themselves in other fields and small scale testing, the product which is now being rolled out is rather pathetic. There are many reasons for this, from the risk-aversiveness of industry movers, to the glacial pace of regulatory shakers, to a general shortage of imagination among decision makers. It is easy to find reasons to be angry and feel betrayed that the US healthcare system has once again failed to live up to its promise of delivering breakneck innovation and improvement.

Even though this is disappointing compared to the technological relief we were marketed, I am still excited about this development. First of all, because it is a step in the right direction, even if a small one, and any improvement is worth celebrating. Secondly, and chiefly, because I believe that even if this particular new product is only an incremental improvement over the status quo, and pales in comparison to what had been promised for the past several decades, the particular changes represent the beginning of a larger shift. After all, this is the first iteration of this kind of life support device which uses machine learning, not merely to enable a fail-safe to prevent medication overdoses, but which actually intends to make proactive treatment decisions without human oversight.

True, the parameters for this decision making are remarkably conservative, some argue to the point of uselessness. The software will not deploy under anything short of perfect circumstances, its treatment targets are short of most clinical targets, let alone best practices, the modeling is not self-correcting, and the software can not interpret human intervention and is therefore mutually exclusive with aggressive treatment by a human.

Crucially, however, it is making decisions instead of a human. We are over the hill on this development. Critiques of its decision-making skill can be addressed down the line, and I expect once the data is in, it will be a far easier approval and rollout process than the initial version. But unless some new hurdle appears, as of now we are on the path towards full automation.

Early to Rise

I am not a morning person. This has been the case for as long as I’ve been old enough to have sleeping patterns to speak of, and unless my metabolism does a total reversal with age, I don’t foresee this changing. I am a person who wakes up late and goes to bed accordingly.

This isn’t because I hate sunrises or morning talk shows; on the contrary, I enjoy both. My problem is that trying to drag myself out of bed in the morning is immensely painful. It often feels like someone is using a metal claw to unceremoniously yank my spinal cord out through a hole in my back, dragging the rest of my body with it by the nerves and sinews. I won’t say it’s the worst pain I’ve every experienced, but it’s up there. I also don’t wake up quickly, either. My brain takes time to boot up in the morning, and during this time I am unable to so much as walk a straight line. The earlier I am woken up, the longer this process takes- if I am dragged out of bed early it can take an hour before I’m conscious enough to make decisions, and leaves me for the rest of the day with an overwhelming exhaustion that borders on clinical narcolepsy.

I am aware that this goes somewhat beyond the normal scope. It’s almost certainly an underlying neurological problem- one of several. Since my brain already has some issues switching gears, it stands to reason that we’re looking at a different symptom of the same cause. But since meds only seem to blunt the symptoms and draw out over a longer period, I am stuck with it. I try to avoid mornings wherever humanly possible, and suck it up when I can’t.

Of course, the problem, as one may suspect, isn’t actually with mornings. The problem is with my brain making the switch from being asleep to fully awake. In particular I have more trouble than most waking up when my brain is at an inopportune point in the sleep cycle.

Theoretically, this could be addressed on the other end- getting to bed earlier in order to make sure I get the right number of hours of sleep to wake up naturally at, say, 8:30 (which I know isn’t early by most definitions, but compared to my current routine, may as well be pre-dawn). Here we run headfirst into my other problem: severe and chronic insomnia, exacerbated by metabolic disorders that make it not only difficult, but actually dangerous to fall asleep at a reasonable hour most nights.

The situation of being a college student doesn’t help. In many ways the stereotype that college students are bad at time management is self reinforcing. Campus events start and run late, and emails containing essential information and even assignments are sent out hours before midnight. Facilities open from 10-1am. The scheduling of exams and final projects mere days after the material is covered makes long term planning impossible, and reinforces crunch time and cramming- even more so since it is all during the same few weeks. Last minute scrambling is not merely routine, it is impossible to avoid.

For as often as Americans ridicule the collectivist workaholism of Japan, China, and Germany, we suffer from the same kind of cultural fetish, or at least our young people do. Hauling oneself up by one’s bootstraps is used to encourage behaviors that are anti-productivity; destroying sleep schedules and health in order to make deadlines so that one can continue to repeat the same cycle next year. I could, and probably will eventually, write a whole post on these attitudes and their fallout, but for the time being, suffice it to say that being a college student makes already difficult problems much harder.

But I digress. The point is, my sleep schedule has become unsustainable, and I need to make some changes. Getting to bed earlier, though a good idea, will not work on its own, since every time I have tried this I have wound up laying in bed awake for hours, making me feel less rested in the morning. What I need to do, and what I’ve dreaded doing, is force myself to get up earlier and get going, so that I will be tired enough to actually fall asleep at a (more) reasonable hour. In essence, I am performing a hard reset on my sleep schedule.

As schemes go, this one is fairly straightforward, but that doesn’t make it any easier. The fact that it is necessary does not make it easier either. But it is necessary. Not only do future plans depend on it, but being able to recognize, plan, and execute these smaller points of self improvement is critical to any future I hope to have. I am rising early to great the dawn not only in a literal sense, but in a metaphorical sense as well.
At least, that is what I shall be telling myself while dragging my sorry behind out of bed.

Re: John Oliver

So I had a bunch of things to say this week. I was actually planning a gag where I was going to shut down part of the site for “Internet Maintenance Day“. Then stuff happened that I felt I wanted to talk about more urgently. Than more stuff happened, and I had to bump back the queue again. Specifically, with regards to that last one, John Oliver released a new episode that I have to talk about.

If you don’t care to watch, the central thesis of the episode is, in a nutshell, that our medical device regulation system sucks and needs to be more robust. And he’s not wrong. The FDA is overstretched, underfunded, strung up by political diktats written by lobbyists, and above all, beset by brain drain caused by decades of bad faith and political badmouthing. The pharmaceutical and biotech lobby has an outsized influence on the legislation (as well as executive orders and departmental regulations) that are supposed to govern them.

But, and I’m going to repeat this point, the system isn’t broken. Don’t get me wrong, it’s hardly functional either, but these problems are far more often ones of execution than of structure.

Let’s take the 510(k) exemption that is so maligned in the episode. The way it’s presented makes it seem like such a bad idea, that surely this loophole must be closed. And I’ll agree that the way it’s being exploited is patently unsafe, and needs to be stemmed. But the measure makes sense under far narrower circumstances. To use an example from real life, take insulin pumps. Suppose a pump manufacturing company realizes that it’s replacing a high number of devices because of cracked screens and cases occurring in everyday use. It takes the issue to its engineers, who spend a few days in autocad making a new chassis with reinforced corners and a better screen that’s harder to crack. The guts of the pump, the parts that deliver insulin and treat patients, are unchanged. From a technical perspective, this is the equivalent of switching phone cases.

Now, what kind of vetting process should this device, which is functionally identical to the previous iteration aside from an improved casing, have to go through before the improved model can be shipped out to replace the current flawed devices? Surely it would be enough just to show that the improvements are just cosmetic, perhaps some documentation about the new case and the materials. This is the kind of scenario where a 510(k) style fast track would be good for everyone. It saves time and taxpayer money for regulators, it gets the company’s product out sooner, and consumers get a sturdier, better device sooner. This is why having that path is a good idea.

Not that the FDA is likely to apply section 510(k) in this scenario. Insulin pumps tick all the boxes to make them some of the most regulated devices in existence, even more so than most surgical implants. Any upgrade to insulin pumps, no matter how inconsequential, or how urgently needed by patients, is subject to months of testing, clinical trials, reviews, and paperwork. The FDA can, and regularly does, send applications back for further testing, because they haven’t proven beyond a shadow of a doubt that there is no risk. As a result, improvement to crucial life support devices are artificially slowed by regulations and the market’s reaction to regulations.

Here’s the other thing to remember about medical devices: for as much as we hear about the costs of prematurely releasing devices, there is also a cost to delaying them. And frustratingly, the ones which often have the greatest cost to delaying- devices like insulin pumps, monitors, and other life support -tend to be subject to the greatest scrutiny, and hence the longest delays. For while the FDA examines numbers and research data, real patients continue to suffer and die for want of better care. We might prevent harm by slowing down the rollout of new technologies, but we must acknowledge that we are also consigning people to preventable harm by denying them newer devices. Some argue that this is morally preferable. I staunchly disagree. More than just trying to protect people from themselves, we are denying desperate people the hope of a better life. We are stifling innovation and autonomy for the illusion of security. This isn’t only unhelpful, and counterproductive, but I would argue it’s downright un-American.

Rest assured I’m not about to go and join the ranks of the anarchists in calling for the abolition of regulatory agencies. The FDA is slow, inefficient, and in places corrupt, but this is as much as anything due to cuts in funding, usually made by those who seek to streamline innovation, which have limited its ability to fulfill its mandate as well as ironically made processing applications slower. A lack of respect for the agency, its job, and the rules it follows, have inspired unscrupulous companies to bend rules to their breaking point, and commit gross violations of scientific and ethical standards in pursuit of profit. Because of the aforementioned lack of resources, and a political climate actively hostile to regulatory action, the FDA and the agencies responsible for enforcement have been left largely unable to follow their own rules.

Cutting regulations is not the answer. Improving and reforming the FDA is not a bad idea, but the measures supported by (and implied to be supported by) John Oliver are more likely to delay progress for those who need it than solve the issues at hand. A half-informed politically led moral panic will only lead to bad regulations, which aside from collateral damage, are likely to be gutted at the next changing of the guard, putting us back in the same place. I like to use the phrase “attacking a fly with a sledgehammer”, but I think this is more a case of “attacking a fly with a rapier”, in that it will cause massive collateral damage and probably still miss the fly in the end.

So, how do we do it right? Well, first of all, better funding for the FDA, with an eye towards attracting more, better candidates to work as regulators. If done right, this will make the review process not only more robust, but more efficient, with shorter turnaround time for devices. It might also be a good idea to look into reducing or even abolishing some application fees, especially for those applications which follow high standards for clinical trials, and have the paper trail to prove ethical standards. At present, application fees are kept high as a means to bring in revenue and make up for budget cuts to the agency. Although this arguably does good by putting the cost of regulating on the industry, and hopefully incentivizing quality applications, it constrains the resources available to investigating applications, and gives applying companies undue influence over application studies.

Second, we need to discard this silly notion of a regulatory freeze. Regardless of how one feels about regulations, I would hope that we all agree that they should at least be clear and up to date in order to deal with modern realities. And this means more regulations amending and clarifying old ones, and dealing with new realities as they crop up. There should also be greater emphasis on enforcement, particularly during the early application process. The penalties for submissions intentionally misclassifying devices needs to be high enough to act as a deterrent. Exceptions like section 510(k) need to be kept as exceptions, for special extenuating circumstances, rather than remaining open loopholes. And violating research standards to produce intentionally misleading data needs to be treated far more seriously, perhaps with criminal penalties. This requires not only regulatory and enforcement power, which already exist on the books, but the political will to see abusers held to account.

Third, there needs to be a much greater emphasis on post-market surveillance; that is, continued testing, auditing, and review of products after they reach consumers. This seems obvious, and from conversations with the uninitiated, I suspect it’s where most people believe the FDA spends most of its effort. But the way the regulations are written, and certainly how they’re enforced in practice, post-market surveillance is almost an afterthought. Most of it is handled by the manufacturers themselves, who have an alarming amount of latitude in their reporting. I would submit that it is this, the current lack of post-market surveillance, rather than administrative classifications, that is the gaping hole in our medical regulatory system.

This is also a much harder sell, politically. Industry hates it, because robust surveillance often prevents them from getting away with cutting manufacturing costs after approval, when reducing costs would lead to reduced product quality, and it means they have to keep on extra QA staff for as long as they remain in business. It’s also expensive for industry because of how the current setup puts most of the cost on manufacturers. Plenty of politicians also hate post market surveillance, since it is a role that is ideally redundant when everyone does their jobs. When something goes wrong, we say that it shouldn’t have been sold in the first place, and when nothing goes wrong, why would we pay people to keep running tests?

Incidentally, from what I have been led to understand, this is a major difference between US and EU regulatory processes. Drugs and devices tend to come out in the EU commercially before the US, because the US puts all of its eggs in the basket of premarket approval (and also underfunds that process), while the EU will approve innovations that are “good enough” with the understanding that if problems show up down the line, the system will react and swoop in, and those at fault will be held accountable. As a result, European consumers have safe and legal access to technologies still restricted as experimental in the US, while also enjoying the confidence that abusers will be prosecuted. Most of those new devices are also paid for by the government healthcare system. Just saying.

Learning Abilities

If I have a special talent, it is that I am very good at learning a lot of things quickly. This isn’t the same thing as being a fast learner; I’m not a fast learner. If something doesn’t click the first time I’m exposed to it, there’s a very good chance it’s going to take me a long time to wrap my head around it. I suppose that makes me lucky, then, that most things tend to click. My real talent is being able to work with lots of information in a format where everything is new, and rapidly put together connected pieces in order to deduce the underlying patterns.

I realized I had this talent in High School, where it served the purpose of helping me bluff my way through classes in which I had no business participating. Most egregiously, in English class, where my class participation counted for a disproportionate percentage of my grade, and my chronic illnesses meant I frequently arrived back just as the class had finished reading a book of which I hadn’t received a copy. On many occasions, I would earn points by building off or reflecting upon points raised by other students. On two occasions, I wrote essays about books I had never held, much less read. I got A’s on both essays, and never scored below an 87% (which was only ever so low because the teacher counted two missed exams as zeros rather than allowing me to retake them) in English as a whole.

Some friends of mine have called this cheating. I disagree. I never claimed that I read the books in question. On the contrary, on the occasions that I mentioned the fact that I had never received a copy to my teachers, I was told simply to try my best to keep up with the class in the meantime while they tracked down an extra copy. So the teachers were aware, or should have been aware, that I was talking off the cuff. I never consulted some other source, like sparknotes, that wretched hive of plagiarist scoundrels and academic villainy.

In any case, I have found this talent to be most useful when diving into a new area. I may not be able to become an expert faster than anyone else, but I can usually string enough information together to sound like I know that of which I speak, and ensure that my questions are insightful and topical, befitting an enlightened discussion, rather than shallow and obvious questions betraying a fresh initiate to the field. This means that I am, perhaps ironically, best in my element when I am furthest behind. I learn more faster by throwing myself into the deep end of something I know nothing about, than reviewing stuff I mostly know.

Secretly, I suspect this is actually not a unique talent. I think most, or at least, many people, learn effectively this way. But whether through a school system designed on a model intended more to promote martial regimentation than intellectual striving, or a culture that punishes failure far more sharply than it incentivizes the entrepreneurial experimentation necessary for personal academic success, we have taught ourselves to avoid this kind of behavior. But whether this talent is mine alone, or I have merely been the first to recognize that the emperor has, in fact, no clothes, this places me in a unique situation.

The problem comes when called upon to follow up on initial successes. Usually this is, in practice, a moot point, because this is precisely where I get sick, miss class, and wind up behind again, where I can capitalize on my skill set and come rocketing back in the nick of time. But this year, with a few exceptions, I have been healthy, or at least, healthy enough to keep up. It turns out that when you follow a course at the intended pace of one week per week, instead of missing months in a febrile delirium and frantically tearing through the textbook in the space of a frantic fortnight, things are, for the most part, manageable.

This is a novel, if not inherently difficult, problem for me- learning at an ordinary pace, instead of a crash course. It’s the informational difference between a week long car trip and an overnight flight. You’d think that learning in such an environment, with one new thing among eleven things I already know, would be easier than taking in twelve new things. But I find that this isn’t necessarily true. I’m good at taking in information,but rubbish at prioritizing information.

The Panopticon Effect

This post is part of the series: The Debriefing. Click to read all posts in this series.

So at my most recent conference there were a lot of research presentations. One of the fascinating things that comes up in clinical studies of diseases that are self-managed, and which was highlighted on several slides, is something I’ve come to call the panopticon effect. It might have a proper name, but if so, I haven’t heard it. The idea is fairly simple, and fairly obvious. For every study that has a control group, almost always, the control group shows better outcomes than the statistical averages.

In cases where control groups receive a placebo treatment, this discrepancy can be attributed to the placebo effect. But the effect persists even when there is no intervention whatsoever. It seems that merely being enrolled in a study is enough to create an increase in whatever outcome is being measured over what would normally be expected.

This could be a subtler extension of the placebo effect. We are constantly finding that placebo, mindfulness, and the like, while never substitutes for actual treatment, do have a measurable positive impact. But there is probably a simpler solution: these people know they are being watched. Even when data is anonomized, and there are no consequences for bad outcomes, there is still the pressure of being under surveillance. And I suspect it has to do with an obligation that study participants feel to be worthy of the research being conducted.

I have heard variations on this theme slipped subtly in to enough different discussions that I have started to cue in on it lately. It is an idea similar to the ones raised over the obligations that patients often feel to fundraise and advocate on behalf of the organizations that bankroll research for their diseases; not mere camaraderie between people with shared experiences, but a sense of guilt for receiving tangential benefits from others’ work.

To briefly repeat what I have said in previous Debriefing articles: this mindset is embedded deep in the collective psyche of the communities with which I have experience, and in some instances is actively exploited by charity and advocacy organizations. The stereotype of sick and disabled being egregiously kindhearted and single-mindedly dedicated to fundraising and/or advocacy is both a cause and effect of this cycle. The same is naturally true of attention from healthcare professionals and researchers.

Frequent patients, especially in the United States, are constantly reminded of the scarcity of help. In every day-long phone call with insurance, in every long wait in the triage room, and every doctor visit cut short because appointments are scheduled back to back months in advance, we are reminded that what we need is in high demand and short supply. We are lucky to be able to get what we need, and there are plenty of others that are not so fortunate. Perhaps, on paper, we are entitled to life liberty, and the pursuit of happiness; to a standard of healthcare and quality of life; but in reality, we are privileged to get even as little as we do.

There is therefore great pressure to be deserving of the privileges we have received. To be worthy of great collective effort that has gone into keeping us alive. This is even more true where research is concerned; where the attention of the world’s brightest minds and taxpayer dollars are being put forth in a gamble to advance the frontiers of humanity. Being part of these efforts is something that is taken extremely seriously by many patients. For many of them, who are disqualified from military service and unable to perform many jobs unaided, contributing to scientific research is the highest calling they can answer.

This pressure manifests itself in many different ways. In many, it inspires an almost religious zeal; in others, it is a subtler, possibly even unconscious, response. In some cases, this pressure to live up to the help given by others stokes rebellion, displayed either as antisocial antipathy or even self harming tendencies. No one I have ever spoken to on the matter has yet failed to describe this pressure or agree that it exists in their life.

Moreover, the effect seems to be self reinforcing; the more attention a person receives, the more they feel an obligation to repay it, often through volunteering in research. This in turn increases the amount of attention received, and so on. As noted, participation in these studies seems to produce a statistically significant positive impact in whatever is being measured, completely divorced from any intervention or placebo effect.

We know that people behave differently when they feel they are being watched, and even more so when they feel that the people watching have expectations. We also know that prolonged stress, such as the stress of having to keep up external appearances over an extended period, take a toll, both psychologically and physiologically, on the patient. We must therefore ask at what cost this additional scrutiny, and the marginal positive impact on health results, comes.

We will probably never have a definitive answer to these sorts of questions. The intersection of chronic physical conditions and mental health is convoluted, to say the least. Chronic health issues can certainly add additional stress and increase risk of mental illness, yet at the same time, make it harder to isolate and treat. After all, can you really say a person is unreasonably anxious when they worry about a disease that is currently killing them? In any case, if we are not likely to ever know for sure the precise effects of these added stresses, then we should at least commit to making them a known unknown.

The N-Word

This post is part of the series: The Debriefing. Click to read all posts in this series.

The worst insult that can be leveled against a person with chronic illness is, without a doubt, the n-word. Oh sure, there are those who defend its use, citing that it has, or possibly had, a proper context. That it evolved from scientific, then clinical, jargon, before finding its way into use as a common slur. They cite dozens of other slurs that are casually slung against the sick and disabled, and ask how such an innocuous phrase with a relatively short history can compare with a more traditionally vulgar term with more malicious intent. But these people are wrong. There is, in the present English lexicon, no word known to me which is worse than the n-word.

Noncompliant.

There is so much wrong with this word that’s it hard to know where to start. Much as it pains me to dwell on this phrase, I think it would be helpful for me to break it down a bit, and explain why it is such a toxic word; a radiological bomb of a slur, causing and spreading otherwise invisible pain and suffering for long after it is used.

It first assumes a moral high ground, implying that the person using it is in a position to dictate morality unto the patient. Then it assumes total control of the patient’s affairs, with the implication that the patient’s only role in their only health is to comply. As though healthcare were run by hydra.

“Your vital signs for this quarter aren’t where we want them. I want you to take a deep breath, and clear your mind. You know what’s best. What’s best is you comply.”

At best, it assumes that a failure to follow instructions is solely the fault of the patient, as though there is no force in the cosmos, let alone everyday life, that could interfere with the timely execution of a medical regimen. Never mind the fact that the kind of regimens we’re talking about- mixing chemicals into usable medicine, drawing up precise doses in syringes, and delivering them several times a day – are routines that, as a healthcare worker, require months of training at minimum, yet patients are lucky if they get half an hour of professional training before being tossed back into the wild.

No, clearly, if you can’t keep to a schedule drawn up by a pencil pusher in a lab, because when the allotted hour rolls around you’re not in a good place to be dealing with sterile medical equipment, never mind your own mental state, it’s your own fault. You clearly don’t care about your own health as much as this doctor that you see once every three months does. So childish are you that you can’t re-organize your entire life to be at the back and call of this disease.

That is the implication of noncompliance. Either a willing petulance, a childish cluelessness, or, at worst, a mental derangement. For indeed, noncompliance is often colloquially synonymous with self-harm. Well obviously we can’t let you have input on your own care if you’re suicidal. Clearly the solution here is to double down and set tighter targets. The n-word is immensely destabilizing in this way, as it insinuates that the patient is incompetent in a way that is extremely difficult to argue against, at least from the patient’s perspective.

All of this assumes that the problem is with the execution of the treatment rather than the treatment itself. For, all to often, patient noncompliance is tossed off as a face-saving excuse by doctors who aren’t getting results from the treatment they prescribed. After all, few patients will actually admit to disregarding medical advice, and so the n-word is often a deduction by doctors based off of clinical results rather than a patient’s activities. The problem is, clinical results can have multiple causes and interpretations.

These issues are not mutually exclusive. A patient may easily stop following their regimen once they find it stops working for them, or once they find they can no longer endure the problems of trying to slot their regimen into their life. And mental health issues which are preventing the execution of a patient’s medical regimen are as much a problem for the doctor as for the patient.

A doctor that leaves a patient with a treatment that does not work for them, for whatever reason, has not done their job. But the nature of the n-word is that is a patient’s problem. Or possibly, it is a problem with the patient, always outside the purview of the doctor’s job.

But too often all this is ignored. The clinician sees bad test results, and sees that they prescribed the treatment which seemed reasonable to them at the time, and so concludes that the patient is noncompliant, jots down a note to that effect, and gives the patient a stern lecture before sending them on their way and encouraging them to do better next time.

There is so much wrong with this situation, and with the dynamic it feeds, which is at best unproductive, and at worst borderline abusive. But by far the worst part is the impact on future healthcare. Because a patient that is labeled as noncompliant is marked. In the United States, this can cause serious issues with insurance and pharmacies in getting medication. The mechanisms by which these problems occur are designed to mitigate abuse of particularly dangerous prescription medications, such as opioid painkillers and antibiotics, which I suppose is fair enough, but because of how medicine in the US works, are applied to anything requiring a prescription.

For people who need their medication to survive, this can be life threatening. As noted previously, being labeled noncompliant can happen even if a patient is doing their absolute best. For those without the resources to switch doctors or fight insurance diktats, the n-word can have deadly consequences, and what’s more, can make patients think they deserve it.

To call a patient noncompliant is to, in a single word, strike at everything they have done to make their life, and to imply that they are not worthy of it. It is an awful slur borne of misguided assumptions and a perspective on healthcare that gives preference to doctors over patients. It is a case study in so many of the problems in the capitalist healthcare system. Unfortunately, this word will not simply go away simply because we all acknowledge that it is awful.

For indeed, the things that make the n-word terrible are in many cases only microcosms of the items which cause suffering to those with chronic health issues. The path to eradicating this slur, therefore, is a combination of renewed curative effort, reforms to the healthcare system, and a greater focus on the patient perspective.