UniQure

The usual story of high-priced drugs goes something like this:

• Company develops drug for semi-rare disease.
• Company sets really high price for drug because it can.
• Public outrage ensues.
• Company defends itself, citing high R&D costs etc.
• More outrage.
• Company shrugs, nothing happens.

But the story goes a little differently for a recent drug designed to cure lipoprotein lipase disorder (LPLD), which affects about one out of a million people. The usual therapy for LPLD is an extremely low-fat diet, but that has limited efficacy. Since LPLD is a genetic disease, women who have it still can’t have children. And even if you follow the strict diet that LPLD demands, you still risk getting pancreatitis, a painful and prolonged problem.

Eventually, you figure that someone would invent something better. If it goes the normal route, it would be a pill or an injection or something that you’d get, say, once a month, and each dose would cost $10,000 or so. That would cause some outrage, but $10,000 isn’t really that outrageous these days—it’s bog ordinary for lots of cancer treatments—so the drug would most likely slide onto the formulary for most insurance companies and become the treatment of choice for yet another very rare disease.

Still, if you add it up, this comes to more than a million dollars over ten years. Sow what if, instead, somebody invented a one-time treatment that completely cured LPLD and then just charged $1 million for it up front? It’s a ton of money, but it works out to be cheaper than the long-term treatments and it’s better for the patients. So why not?

Well, a drug just like this exists. It was approved for sale. It works wonderfully. One treatment cures LPLD completely for at least ten years.  It’s called Glybera, and it was invented by a team of Canadian researchers. The CBC tells us what happened to it:

In the 2½ years it took to win EMA approval, AMT, which had no other products to sell and no revenue from Glybera, lost millions of dollars. The company was formally liquidated in 2012. Its assets were acquired by a new private company, uniQure….To raise enough money to launch Glybera, uniQure partnered with an Italian pharmaceutical company, Chiesi Farmaceutici. For 31 million euros, Chiesi acquired the rights to sell Glybera in Europe, while uniQure retained the rights to the Canadian and U.S. markets….When Glybera finally went on sale in Europe in 2015, it made international headlines for its price: approximately $1 million US for a single dose….The price tag made it difficult to convince European governments and private insurance companies to pay for Glybera.

And that was that. There were a few doses of Glybera sitting on the shelf, and they were given away. Nobody makes it anymore and nobody has any plans to.

So what do you think? Glybera is a great drug because it actually fixes the faulty gene that causes LPLD. Women can have babies, and everyone can live their lives without worrying that a momentary slip in their diet will put them in the hospital. On the other hand, it costs a million bucks. That’s not too surprising for a drug that probably has a total customer base of about a hundred in all of Europe and North America, but still: it’s a million bucks to cure a disease that’s generally not life-threatening. Should an insurance company be required to pay that much? Or a government-run health service?

Questions, questions….

For the last few years, US terrorist incidents motivated by political ideology have remained fairly stable at about 20 per year. Then Donald Trump was inaugurated. This had no apparent effect on left-wing or Islamist attacks (the only other categories aside from right-wing), but it had a huge impact on right-wing violence:

Right-wing terrorist attacks tripled from their previous average during Trump’s first year in office. Thanks a lot, Mr. President.

GM is cutting back production:

General Motors said Monday that it planned to idle five factories in North America and cut several thousand blue-collar and salaried jobs in a bid to trim costs. The action follows similar job-cutting moves by Ford Motor in the face of slowing sales and a shift in consumer tastes, driven in part by low gasoline prices.

….The plants include three car factories: one in Lordstown, Ohio, that makes the Chevrolet Cruze compact; the Detroit-Hamtramck plant, where the Chevrolet Volt, Buick LaCrosse and Cadillac CT6 are produced; and its plant in Oshawa, Ontario, which makes the Chevrolet Impala. In addition, transmission plants in the Baltimore area and in Warren, Mich., are to halt operations.

Part of this is due to Trump’s steel tariffs, which have raised the price of cars and trucks, but mostly it’s due to changing tastes brought about by a big drop in gasoline prices in 2015:

As you can see, domestic auto sales were doing OK up through mid-2014. Then, over the next 18 months, gasoline prices plunged from $3.70 to $2.20 and Americans did what they always do: abandoned gas-friendly autos and went on an SUV binge. Today, trucks and SUVs outsell cars by more than 2 to 1, which is why auto plants are being closed. At the same time, total vehicle sales aren’t exactly on fire either:

The average sales level has dropped by about a million units since 2015. This isn’t disastrous, but it’s hardly what you’d expect in a booming economy, either. The result is plant closures and, before long, the end of virtually all domestically produced cars. The next time gasoline prices rise—and they will, someday—American car companies will have nothing but big piles of unwanted, gas-guzzling SUVs that nobody wants.

Jacquelyn Martin/AP

The Washington Post describes Donald Trump’s private attitude toward the federal deficit:

When former National Economic Council director Gary Cohn’s staffers prepared a presentation for Trump about deficits, Cohn told them no. It wouldn’t be necessary, he said, because the president did not care about deficits, according to current and former officials.

Trump also repeatedly told Cohn to print more money, according to three White House officials familiar with his comments. “He’d just say, run the presses, run the presses,” one former senior administration official said, describing the president’s Oval Office orders. “Sometimes it seemed like he was joking, and sometimes it didn’t.”

Nobody would care much about this except that apparently Trump has changed his mind and now plans a new attack on the deficit while simultaneously demanding (a) increased spending on a bunch of new programs he favors and (b) popular programs not be touched. The authors provide this example from a couple of months ago during the runup to the midterms:

When staffers sought to include an attack on Democrats’ Medicare-for-all proposals in Trump’s campaign speeches this fall, he initially blanched, two administration aides said. Medicare is popular, he said, and voters want it. Eventually, he agreed to the attack if he could say Democrats were going to take the entitlement away.

I’m trying to think of what to say about this, but I’m coming up blank. Trump “agreed to the attack,” but only if the attack was changed to something that was entirely false. Only then was he was OK with it.

That’s our president! The Post writers, needless to say, don’t bother pointing out that Trump’s frequently repeated attack was a lie. Sigh.

Yesterday I posted a quickie survey that asked how many refugees the United States should be willing to accept each year. The response was sort of interesting. Nearly 60 percent of you thought the cap should be 500,000 or less. Among those who provided a numerical answer, the average answer was 300,000. However, a quarter of you thought there should be no cap at all and we should accept anyone who wants to come. Here’s the raw pie chart generated by Google Forms:

As usual, I had an ulterior motive for asking this question. A couple of days ago Hillary Clinton got a lot of flack from liberals for questioning Germany’s decision a few years ago to accept a large number of refugees from Syria:

In an interview with the Guardian, the former Democratic presidential candidate praised the generosity shown by the German chancellor, Angela Merkel, but suggested immigration was inflaming voters and contributed to the election of Donald Trump and Britain’s vote to leave the EU.

“I think Europe needs to get a handle on migration because that is what lit the flame,” Clinton said, speaking as part of a series of interviews with senior centrist political figures about the rise of populists, particularly on the right, in Europe and the Americas. “I admire the very generous and compassionate approaches that were taken particularly by leaders like Angela Merkel, but I think it is fair to say Europe has done its part, and must send a very clear message — ‘we are not going to be able to continue provide refuge and support’ — because if we don’t deal with the migration issue it will continue to roil the body politic.”

In 2015 Germany accepted 1.1 million refugees. This is about the equivalent of the United States accepting 4.4 million refugees.

I don’t want anyone to take my survey too seriously. It’s obviously just a casual thing. However, I think it’s fair to say that the responses are almost entirely from a left-leaning readership, and even at that a solid majority thought the US shouldn’t take in more than half a million refugees in a single year. Adjusted for population, Germany took in nearly ten times that many.

I don’t want to comment at length on this. I just want to put these numbers out there, since they aren’t obvious and most people don’t know them—but they are the numbers that motivated Clinton’s response. The point of this is fairly mundane: if Germany accepted nearly ten times as many refugees as even a liberal audience in the US would be comfortable with—and about 50 times as many as the US actually takes in—it’s hardly unreasonable for even a liberal politician to suggest that this produced a widespread and formidable backlash.

In other words, this isn’t Hillary Clinton suggesting that we need to adopt a demagogic Trumpian approach to refugees in order to beat the Trumpists. It’s Hillary Clinton suggesting that there are limits, even for liberals who believe in a far more compassionate refugee policy. Based on your responses to my question, I’d say that most lefties agree with her. But there’s no way to know that unless you also know the actual numbers at issue.

This week features another fence picture: this time it’s Hopper unknowingly being photobombed by Hilbert. Or maybe not so unknowingly after all. She looks fairly alarmed, after all. But nothing happened. They just roamed the fence together and then hopped down when they got a little hungry. Another typical day.

Cheriss May/NurPhoto via ZUMA

On Tuesday, Donald Trump wrote a statement defending Saudi Arabia because they: buy lots of military equipment from us; sell lots of oil to us; are on our side against Iran; and anyway, we’ll never know if the Kingdom’s Crown Prince—and de facto leader—knew anything about the murder of Jamal Khashoggi. “Maybe he did and maybe he didn’t!” Trump wrote, despite the fact that the CIA says it knows definitively that he did.

The next day Glenn Greenwald defended Trump on the grounds that he was merely being a little more candid than usual about longstanding US foreign policy:

So extensive is the active, constant and enthusiastic support by the U.S. for the world’s worst monsters and atrocities that comprehensively citing them all, in order to prove the ahistorical deceit of yesterday’s reaction to Trump’s statement, would require a multi-volume book, not a mere article. But the examples are so vivid and clear that citing just a few will suffice to make the point indisputable.

[Examples provided at length]

None of this recent, ugly history…justifies what Trump did on Tuesday. But what it does do is give the lie to the flamboyant claims that Trump has somehow vandalized and degraded U.S. values and U.S. foreign policy rather than what he actually did: upheld their core tenets and explained them to the public with great candor and clarity.

….If you want to denounce Trump’s indifference to Saudi atrocities on moral, ethical or geo-political grounds — and I find them objectionable on all of those grounds — by all means do so. But pretending that he’s done something that is at odds with U.S. values or the actions of prior leaders or prevailing foreign policy orthodoxies is not just deceitful but destructive.

Without commenting generally about the vileness or otherwise of US foreign policy, there’s not much question that (a) our alliance with Saudi Arabia goes back a very long way and (b) Saudi Arabia is a loathsome nation on many, many levels. Unless I missed it, Greenwald didn’t even cover everything. Not their revolting domestic policy toward women, gays, and non-Muslims. Not their cynical and cowardly alliance with the murderous Wahhabist clerical establishment. Not their proselytization throughout the world of a vicious, terror-supporting version of Islam. Not the fact that 9/11 was largely a Saudi operation, carried out by low-level Saudis and almost certainly supported and funded by higher-ranking Saudis. The absolute theocratic monarchy of Saudi Arabia doesn’t operate with quite the attention-grabbing flash of genocidal dictators like Saddam Hussein or Pol Pot, but when you add everything up, they’re probably just as bad. Maybe even worse when you consider the longevity of the Saudi state—though I’m not willing to make any firm comparisons here since I’m not in a mood to tot things up and figure out where they belong in a Top Ten list.

In other words, I agree with Greenwald at the level of ground truth.¹ And I don’t really blame him for being disgusted. At the same time, public words matter. All nations operate their foreign policy with some level of hypocrisy because they have legitimate national interests that sometimes require them to be less than pure. But hypocrisy has its virtues. It allows greater freedom of action. It allows leaders to make private threats that can alter the actions of murderous states. And it keeps the reins on public support for bad actors.

Trump has thrown that all away. His statement was so blunt and so approving that he’s completely lost his freedom of action. It’s now clear to everyone that he will support Saudi Arabia no matter what. Nor can he pretend that he might try to influence Saudi Arabia for the better. His leverage is gone. And by making such a clear statement, he’s brought Saudi Arabia to the attention of many rank-and-file voters who never cared one way or the other before. This level of overt politicization, with the cult of Trump behind it, almost certainly adds public support for Saudi Arabia to the already massive support for them among the foreign policy establishment.²

Trump has destroyed even the faint hope of moving the dial on either US or Saudi foreign policy. The fact that his statement sounds like it was written by a middle schooler only makes things worse. It’s worth condemning on all these grounds, no matter how critical you are of US foreign policy over the past 40 years.

¹Though, as usual, I find his contempt for Barack Obama hard to understand. Obama, like all US presidents, was heavily constrained by our foreign policy establishment, but in the end he did provide Saudi Arabia with less support than any previous president—and the Saudis made no secret of their intense dislike of Obama over this. I think Greenwald underrates just how hard this is in real life, and how much credit Obama deserves for taking even baby steps against the virtually unanimous opposition of the entire US government.

²Though I suppose it works in the opposite direction too. There may be plenty of Trump haters who also didn’t care one way or the other about Saudi Arabia, but now consider them public enemy #1.

Eugene Scott reports that most of America disapproves of the way Donald Trump is handling race relations:

Nearly 60 percent of Americans disapprove of the way Trump is handling race relations, according to the most recent Quinnipiac University poll. The only group that gives him high marks are Republicans, with 76 percent. White men are the next highest, with half approving of Trump’s handling of race relations.

Unfortunately, this implicit suggestion that the public is getting ever more tired of Trump’s racial attacks is not the real story. Here’s the real story:

Scott alludes to this in the sixth paragraph in the most ambiguous possible way, but the plain story here is that disapproval of Trump on race has abated over the past year. This makes it awfully hard to suggest that these poll results “could be because of how the president handled race during the midterms.”

At least, I sure hope so. As Scott points out, Trump’s attitude toward race was pretty revolting during the midterms, and if this helped lead to a lower disapproval level then we’re in even worse shape than we thought.

As it happens, my guess is that this mild downward trend doesn’t mean much: it was probably just a combination of polling artifacts and the natural consequence of Charlottesville fading into the past. Most likely, Trump’s handling of race had no noticeable impact at all on how people graded his performace. Isn’t that bad enough?

You may be aware of the scammers who pretend to be IRS agents and make phone calls demanding payment of back taxes. The most bizarre thing about this is that they want payment in gift cards. Gift cards! And yet this still doesn’t tip some people off. They scurry off to their local supermarket, buy a bunch of gift cards, and then provide the scammers with the serial numbers of the cards. David Dayen explains:

A Federal Trade Commission bulletin in May warned Americans of an epidemic of gift card fraud. Specifically, the FTC highlighted callers claiming to be with the IRS or a family member and asking for payments in gift cards. Unsuspecting victims then buy gift cards and hand over the codes. Scammers can use them to either buy goods and services, or flip them in the resale market while simultaneously draining them of funds, making money twice on the same card.

Because of this, several stores have cracked down a bit on the ability to buy gift cards with gift cards. However, it turns out there’s another aspect of this racket: Bitcoin. Dayen’s story is all about a guy who sells bitcoin at a markup to people who can’t acquire it on their own. He takes payment in gift cards, launders the cards into other gift cards at Walmart—thus protecting himself from being tracked down—and then uses the gift cards partly to buy stuff and partly to buy more bitcoin in order to keep his business going. There’s nothing especially illegal about any of this, aside from a technical terms-of-service violation. But something else struck me when I read about it.

This is a wildly Rube Goldberg sort of operation, and it only works because so many people who want bitcoin have trouble buying it. If this were merely because bitcoin is rare and hard to find, that would be fine. Likewise, if the markup were basically like a small brokerage fee, it wouldn’t mean anything. But it’s more on the order of 30 percent or so. This makes no sense. Bitcoin has a public price, just like a stock on the stock market, and it’s traded on a variety of exchanges. With competition like this, there should be no special problem buying bitcoin for a small brokerage fee if you have the ready cash to do so.

Apparently you can’t always count on that. But why would holders of bitcoin be unwilling to sell it for dollars at the going price? In any normal market, buyers and sellers would be established, the price would fluctuate a bit on a daily basis as bids and offers were matched up, and the market would clear. If that doesn’t happen—especially with a digital currency traded on digital exchanges—something ain’t right. There’s no weird black market in Exxon stock, after all.

This is, I admit, a tiny pebble in the mountain of evidence that bitcoin is fundamentally a fraud, with specific groups controlling the whole thing. But every mountain is built on small pebbles like this. It’s yet another reason to be very, very skeptical of bitcoin on every imaginable level.

Have you seen this tweet?

Who ‘bagged their own Carrots’ this morning? 🥕

Share your pics of your cuddly friends in their new homes with #KevinTheCarrot! 🥕 pic.twitter.com/sQIf4Aq7iq

— Kevin The Carrot (@IKevinTheCarrot) November 22, 2018

No? Shame on you. The 2018 version of Kevin the Carrot is the Christmas toy of the year in Great Britain. The Daily Mail, in its usual restrained style, describes what happened when the carrots went on sale Thursday:

Mayhem erupted in Aldi stores this morning as shoppers battled to get a hold of the supermarket’s Kevin the Carrot soft toy range. There were chaotic scenes with reports of huge queues as people tried to snap up the sought after toys — leading to ‘massive scraps and crushing’.

Made famous by Aldi’s Christmas advert, the collection includes Kevin and Katie, their offspring Jasper, Chantenay and a baby….Kevin’s and Katie’s offspring can also be bought in a set for £3.99, along with a small Pascal the Parsnip, which also retails at £3.99.

….User @SteSharp said: “Just seen two adult nearly fighting over a Kevin the carrot in @AldiUK crazy times….@Stuartfergus said: “Never seen anything like that before @AldiUK old people getting knocked off their feet and kids pushed out the way… grown men sprinting down aisles to try and be first for Kevin the carrot and his clan.”

Pascal the Parsnip is the bad guy in the Kevin universe. This pleases my mother, who has never liked parsnips. Here is this year’s ad for KC:

I think this partly makes up for the abominable slanders against the name Kevin that are common in Germany. This phenomenon even has a name: Kevinism. Apparently it started as a joke, but then some bored university researchers decided to look into it for real. Wikipedia explains:

According to a master’s thesis authored at the University of Oldenburg in 2009, certain given names of students can indeed lead to prejudices on the part of teachers. For example, the name Kevin, given to a German child, indicates to German teachers that such a student is prone to behaviour consistent with an intention to gain more attention, as well as lower scholastic performance, and is also indicative of a lower socioeconomic status….Prejudice of this type is understood to be more prevalent amongst teachers in Western Germany.

….The word “Alpha-Kevin” (combination of Alpha male and the given name), as being representative of a particularly intellectually-challenged young person, was, for a time, at the top of the list, which was the subject of a 2015 online poll for the Word of the year (Germany) and, particularly, the youth word of the year. However, it was struck from the list of suggestions on account of being discriminatory to people bearing the name Kevin.

I should hope so. After all, a 2012 study showed that many university students are named Kevin, and even some doctoral students. So there!

By the way, here in America I’ve noticed an odd surge in the use of the name Kevin over the past few years. You probably wouldn’t notice this unless it was your name too, but it pops up in commercials and TV shows much more than it used to. I’m not sure why, since the name itself is no more popular—

Wait. It just occurred to me that I don’t have to guess. I can simply look up the popularity of the name. Here it is:

I’ve overlaid the name of my sister, Karen, who was born in 1956, the peak of Karen-mania. I was born in 1958, as Kevin was shooting up the charts, just a few years before it reached its peak in 1963. This shows that my parents, who say they picked our names for no particular reason, were, in fact, just slaves to fashion. In the spirit of sibling rivalry, I’ll also point out that while Karen may have peaked higher than Kevin (#7 vs. #11), Kevin has shown far more staying power. Karen fell out of the top 100 in 1987, while Kevin managed to gut it out until last year.

This also explains the Kevin phenomenon I mentioned. With a peak in 1963, it means there was a bulge in the number of 45-55 year-olds named Kevin starting around five years ago. So not only is the name Kevin more widespread among the middle-aged than it used to be, it’s also a pretty common age for characters in commercials, since it’s when most people reach their peak buying power. This suggests that it will probably fade out in mainstream commercials in about a decade, but will then start to become popular in pharmaceutical ads.

In fact, now that I see this, I wonder if advertisers keep track of statistics about baby naming. That is, do they tend to name their middle-aged characters based on popular names 50 years ago, so that current 50-year-olds will feel comfortable when they see them? It wouldn’t surprise me at all. Does anyone in the biz happen to know?