The Cost of Staying Alive?

In the latest issue of Science, there’s an article about Trikafta (elexacaftor/ivacaftor/ tezacaftor), the first triple combination therapy available to treat patients with the most common cystic fibrosis mutation, which was approved by the FDA this past October.

In the U.S. alone, there are more than 30,000 people with cystic fibrosis, an inherited condition characterized by the buildup of thick, sticky mucus that results in progressive damage to the respiratory system and chronic digestive system problems, and that can have other complications as well. A generation ago, children with CF seldom lived to adulthood, and even today CF sufferers seldom live to age forty. Currently, there are more than 30,000 people in the U.S. with the disease.

In the interests of full disclosure, I have a personal interest in cystic fibrosis, because almost forty years ago one of my daughters was given a preliminary diagnosis of CF, which was indeed terrifying. Fortunately, additional tests determined that she didn’t have CF, but a combination of other factors mimicking it, which were treatable, and she recovered without lasting ill-effects. But that experience definitely made me aware of the devastating effects of cystic fibrosis.

So, the development of Trikafta struck me as a godsend for cystic fibrosis sufferers… until I saw the price tag, $311,000 a year [the “list” price], every year. That’s what it will cost to provide CF sufferers with the chance to live a close to normal and productive life.

Since Trikafta is designed to deal with the most common form of cystic fibrosis, it won’t work for all CF sufferers, but even if it only works for 60%, the annual cost to those people, or their insurors, would total nearly $6 billion.

Needless to say, some medical insurance companies have already turned down patients.

Somehow, I doubt that developing Trikafta cost anywhere near $6 billion, and it strikes me that, at least from everything I’ve seen published (and I hope I’m wrong), this is just another form of medical extortion.

An Unacknowledged Double Standard

There are many “double standards,” and I’ve written about some of them, many involving gender, such as the fact that the behavior that men – and even some women – describe as tough and strong when performed by a man is regarded as “bitchy” and controlling when a woman’s the one who does it. Blunt and honest comments by a child are charming candor, but unacceptable when uttered by adults, particularly subordinate adults. When crooks kidnap someone and demand a huge ransom for that life, it’s criminal extortion, sometimes punishable by death, but when pharmaceutical companies essentially do the same thing, it’s justified as “the cost of doing business.”

In an oldish movie – The Big Chill – when one character rationalizes a decision he made, another calls him on it, and the first character objects, to which the second character replies with words to the effect that, “Have you ever been able to get through a day without a rationalization? Have any of us?”

We all rationalize, some far more than others, and, like it or not, most people throw in a few lies along the way, lies like “it won’t make any difference” or “who really will know?” All that’s human nature.

At the same time, none of us like being lied to… but we also want to hear what we want to hear, and we tune out, or disagree with people who tell us what we don’t want to hear.

Politicians are people, too. In this country, we elect them, and we don’t want to elect people who don’t think the way we do. But one of the problems with human nature is that we feel more strongly about negatives. So… if a politician disagrees with us on a few issues, even if we agree with him or her on most issues, we tend to oppose that politician. And there are scores of issues about which some groups feel strongly, which means that no politician can please anyone on everything, and negatives impact voters much more than positives.

Politicians know this. That’s why they waffle on hot-button issues, or try to word their stance in ways that don’t rile people.

Then people really get upset. “He [or she] led us on… lied to us…”

Voters don’t want honesty; they want agreement… on everything they think is important.

But there’s never enough money for everything everyone wants, and no way to satisfy a majority on all the issues people feel strongly about. But politicians want to keep their jobs. So what do they do? They behave exactly the way their constituents do; they rationalize, with occasional lies.

Under those circumstances, exactly what else should we expect? Except we expect the politicians we elect because we identify with them to be so much better than we are, and we get angry when they aren’t.

Context

A few nights ago my wife and I were at a small dinner party held by a friend. One of the other guests was a retired sales executive, who’d spent most of his working life with a reputable and well-known company. Somehow, the talk drifted from small town politics to the national scene, and I made the mistake – and it is a mistake in the state in which I live – of disparaging the probity of the present occupant of the White House, and noting that he’d set an all-time record for falsehoods. My second mistake was to assume that someone who had spent his entire professional life counting numbers and basing his decisions on them would show equal rationality with political numbers.

His immediate response was. “He’s no different from the others. What about ‘I never had sex with an intern?’ or “You can keep your own doctor?’ They’re all liars.”

No… they’re not. As I’ve said here before, based on my personal experience of eighteen years in various staff capacities in national politics – all as a card-carrying Republican – while there are a significant number of politicians who waffle, who bend the truth, or who employ accurate facts in an inaccurate context, the number who deal in bald-faced and blatant falsehoods is comparatively few, and almost none of those come close to Trump in the extent and blatant untruthfulness of prevarication.

Both Clinton and Obama – who are so often cited as lying Democrats by rationalizing Republicans, have essentially each been attacked for one “lie.” Clinton’s lie was about a semi-consensual sex act, which, while it revealed his sexual amorality, was essentially irrelevant to his performance in office… and, frankly, was little different from a whole line of previous Presidents, a number of who have been called “great.” And, as for Obama’s ‘keeping your own doctor” remark, that statement was what Obama thought the act would do, and, in fact, the majority of people did get to keep their own doctor. Obama’s biggest problem was his inability to understand that almost no executives in big medicine, big medical insurance, or big pharma have anything even faintly resembling integrity… or care for anything except bigger profits.

Just like that former executive, who rejected what I pointed out, Trump’s base and most remaining Republicans have little or no interest in evaluating events in context. One or two “lies” by a Democrat that they don’t like is the same as thousands by Trump. Trump’s falsehoods are indeed in the thousands, and they also involve dubious, if not illegal, acts affecting government, the integrity of our elections, and trying to keep his “people” from being held accountable.

While there may be lies, damned lies, and statistics… there are great differences in lies, and calling them all equal is the coward’s way.

Hard Choices

Unless Donald Trump actually shoots someone, or does something equally stupid or horrible, the Senate won’t even come close to convicting him on the articles passed by the House of Representatives. The reason most analysts give for this conclusion is the polarization and tribalization of American politics.

At the same time, I don’t see anyone going into the basic reason behind the polarization of government. There are plenty of commentaries and articles offering reasons why the electorate is polarized, but in our history there have been many times where there’s been significant civic polarization, but only one other time, at least as I see it, where the legislative branch has been so polarized.

And the reason for those two instances is the triumph of short-term greed over ideals and long-term economics.

Most people don’t quite understand the basics behind the Civil War. That conflict is often presented in a form of good versus evil. Sometimes, it’s presented as a struggle between two different economic systems. In fact, it really wasn’t either. It was a struggle between two different visions of capitalism. The economic elites of both North and South were capitalists, but their forms of capitalism differed. The North invested much of its capital in equipment, and paid near-starvation wages to those who worked in the factories. The South’s “capital” was largely invested in slaves; they were the equivalent of machines, and they were also often poorly fed.

Because the South’s “capital” was largely in slaves, and in land worked by those slaves, any form of abolition would have immediately bankrupted or at least severely impoverished most Southern landholders… which was largely what later occurred as a result of the Union victory. Yet the southern elite could see no way out of the problem, simply because so much wealth was in the slaves they held. That meant that Southern politicians could not compromise, not when any compromise would have meant economic disaster in the Old South. Those politicians felt they could not make hard choices, and they refused to look to the North or to the rest of the world, where most industrialized nations were outlawing slavery and the slave trade.

The result of failing to make hard choices in the years leading up to the Civil War led to an even greater disaster in the long run, just as today’s failure to deal with economic and environmental problems will make the eventual reckoning even more costly and disastrous.

We face a situation similar to the 1840s and 1850s today, if in a more fragmented way. For example, coal is viewed as cheap energy, just as slaves were cheap labor. But what those whose economic well-being has been based on cheap coal don’t want to see is that coal is anything but cheap if all its costs are considered. Over 80,000 miners are known to have died from black lung. The costs of black lung disability benefits now exceed $100 billion. According to a report published in the Annals of the New York Academy of Sciences back in 2011, the external costs of coal-fired power are twice the direct costs. In other words, it costs twice as much to deal with health, waste, and environmental costs of a coal-fired power plant as it does to generate the power.

There have been more than a few documentaries on Amazon’s brutal workplace practices, which are the 21st century equivalent of the wage-slaves of early industrialization. At the same time, the real wages of the majority of Americans are declining. Life expectancy of certain economic and age-groups has actually declined in the last decade, for the first time in a century.

But the Legislative Branch of our government is polarized, and in considering some issues, paralyzed, largely because any realistic solutions are seen as politically unacceptable. The right wing feels the industries supporting its senators and representatives cannot or will not change because the costs are too high. The left wing won’t compromise from idealistic standards that cannot possibly be funded [regardless of what Elizabeth Warren or Bernie Sanders claim]. Members of either side refuse to make the hard choices because they fear that, if they do, they won’t be re-elected… and re-election is far more important than the future of the country… or the planet.

So no one will make hard choices… and, if they don’t…

“Improvements?”

Earlier this week when I sent the manuscript of Isolate to my editor, we encountered a number of technical glitches because various “improvements” in Word created difficulties we’ve never encountered before.

This isn’t a new problem for me; it’s a recurring one. Even though I’m using Word 2010 on my writing computer because it had features that don’t work on later versions, the “updates” often limit or cripple those functions. For example, in Word 2010, I used to be able to do a global word search for a particular word in all the files in a given directory. Now, that’s become spotty and unreliable, and it’s impossible [at least I haven’t found any way to do that] on later versions of Word. This is particularly useful function for me, and losing it for all the “improvements” that I don’t use is irritating. Likewise, the three-keystroke speed keys that shift me out of what I’m working on because I made a typo [and sometimes lose some of what I’ve just written] are also annoying. And my editor has other problems that she never has had before in terms of compiling what authors send her.

This so-called improvement isn’t limited to Word or Microsoft; it seems to be everywhere. I don’t do MP3 music downloads, but I discovered that, in the interests of getting a lot of music into MP3 format, something like 90% of the actual music/”tone” is eliminated in order to obtain the necessary file compression…and the majority of listeners apparently don’t notice or don’t care.

My wife the music professor has discovered that, with every new version of certain technical vocal pedagogy software programs, the newer versions are both simplified [leaving out important technical details] AND also more expensive… and that the older and better software doesn’t work on newer operating systems.

How many of these “improvements” are just so the manufacturers can force upgrades to yet more glitch-ridden software and systems that provide “features” that only a minuscule number of users will ever utilize while compromising and eliminating more utilitarian features employed by a far wider range of users?