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April 29, 2016

Your FDA at Work

I look forward to the day I can stop posting these stories and stop complaining. But this tale of the FDA blocking treatment for Duchenne Muscular Dystrophy hits too close to home. I saw a video of a mother with two sons. Both had Duchenne. One was in the trial and had to watch his brother deteriorate because he could not get this treatment. You'd think the FDA would at least let Mom decide which kid she wants to let the government kill.

No, measured speech will not be employed in this post. I have been on trials for nine years and have seen how resource-intensive they are. Big Pharma has spent a ton of dough on me: some to develop and test product, but as much or more to satisfy a government which keeps the compound that helps me away from the others in the infusion room. At least they're not my brothers.

A small company like Sarepta can't summon the resources to produce unlimited drug doses at government whim, but set that aside. There aren't enough patients for such a double-blind trial. An estimated 12,000 boys in the U.S. suffer from Duchenne, but only 13% have the mutation amenable to eteplirsen (more iterations are on the way, unless FDA prevails). Many patients have deteriorated too far to be eligible or live too far from a city with a trial.

FDA's demands also violate ethical standards of medicine. Eteplirsen requires a weekly muscle infusion, with biopsies that are exhausting and risky for someone with a degenerative neuromuscular disorder. The agency would ask kids to be lab rats and lose the ability to walk or catch a ball while receiving intensive injections of what might be sugar water.

Well, those 12,000 boys can just wither and die I guess. I'm sure a new study will help the next generation of patients. Oh. Wait.
FDA has suggested no alternative path to approval.

JS Mill weeps. If you cannot read the story, let me know and I will smuggle through the paywall.

UPDATE: Here is the story I mentioned of the mother with two sons.

But Keith Arnold thinks:

Your words are far less outraged than you would be entitled to use.

Unlike Rick Perry, I would have no problem at all naming three Federal agencies that I would take a chainsaw too, and I wouldn't need to trade any draft choices to make the FDA a first-round pick (hey, by the way, Paxton Lynch? Great choice, especially under the tutelage of the right QB coach.). If we were a free society, this mother - and for that matter, you - would be able to walk into a pharmacy, point, and say "our doctor says we're going to try that one." A willing buyer and a willing seller shouldn't need to deal with a nosy government coming between them.

With respect to your personal stake in this, I will yield the floor to you. Don't apologize for making a full-throated protest at this government's unfitness to deal with the circumstances.

Posted by: Keith Arnold at April 29, 2016 12:47 PM
But johngalt thinks:

Double-blind trials suck. I read an article on cancer immunotherapy studies last week, however, where they give all of the study participants the trial drug. There are no sacrificial placebo patients. I wonder why the double standard?

"I Survived Stage IV Melanoma: How Immunotherapy Saved My Life"
'Health' magazine, May 2016 issue

Posted by: johngalt at April 29, 2016 1:06 PM
But johngalt thinks:

Re: Paxton Lynch - In my circles we're pretty happy with the pick. Brock who? Don't know anyone by that name. ;)

Posted by: johngalt at April 29, 2016 1:54 PM
But jk thinks:

For better or worse, double-blind is the government standard. There are a few oddities. I received routine and expensive MRIs -- but my neurologist was not able to see them. Mmmkay.

When "shopping" for trials, I was very careful to select studies where full placebo was not an option. I was deteriorating quickly and didn't want three years of sugar pills.

My first trial was a combination on two drugs; some got both, some one, some the other. They go through these elaborate double-blinding but both compounds have huge and notable side effects; you knew what you were on in a few weeks, and if you chatted with your Doctor, so did he or she. I gave myself a shot every day for three years that I was 91.753% sure was nothing. Your blog brother is truly dedicated to science.

My second (and successful) one was a Phase II where they were trying different dosages. A bag would show up with my initials on it and they'd insert (IV, not suppository...) it without knowledge of the dose. That probably was a decent variable. [SPOILER ALERT:] That stopped progression of symptoms for all intents and purposes and I am on a continuation trial where I take a known dose and they just make sure I am still alive and have not "grown an extra teat" as my wife tells the story.

Since that time, I have listened to several of Russ Roberts's EconTalk podcasts. If you go by the numbers, the placebo control group in many trials does quite well. That is counter-intuitive and depressing to someone who celebrates innovation as I do. But in many trials it is not a death sentence to draw the sugar card.

I'll call this study different. There is a minimal chance of "just getting better" and I take their point on the stress and potential harm of treatment.

Posted by: jk at April 29, 2016 2:15 PM

April 28, 2016

Troll Level: Grand Master!

Ten Points. Hat-tip: Ed Driscoll @ Insty

Life Imitates ThreeSources II

Now [Deirdre] McCloskey doesn't much like the word capitalism, the "C-word" as she terms it. "Our riches," she writes, "did not come from piling brick upon brick... or bank balance on bank balance... but from piling idea on idea." Capital, in all its forms, was necessary but not sufficient. -- James Pethokoukis

April 27, 2016


Reduced electrovalence leads to lower than expected energy output from fossil fuels in West last year.
No, wait...
But johngalt thinks:

"What do you mean by "candle famine" grampa?"

"Well it wasn't directly a shortage of candles, you see. But in the great cool-down of ought-thirty, when global wind patterns calmed by fifty percent, most of our larger cities were dependent on wind turbines for baseline electrical generation. And when the wind stops blowing, there's no support for the grid that used to run on the safe and abundant hydrocarbon fuels that our ancestors used for so long. Voilla, everyone was in the dark from sundown to sun-up. At least those who hadn't had the good sense to stock up on candles and kerosene."

"Now be a good boy and run down to the cellar for another bucket of coal. It's getting cold in here again."

Posted by: johngalt at April 27, 2016 2:17 PM
But jk thinks:

I would chortle openly, but I am still reeling from this video.

Charles C. W. Cooke provides a serious, lukewarmer perspective against Bill Maher and a handful of TV stars. The audience cheers at the President's bankrupting of Coal and boos nuclear.

Take your Lithium before watching. (All we need to do is watch a TED talk and do what Elon Musk says.)

Posted by: jk at April 27, 2016 3:06 PM
But nanobrewer thinks:

That video was enervating, to be sure. What TED talk is worthwhile, JK? I've given up on them except for anything by Dr. Ridley.

Posted by: nanobrewer at April 28, 2016 11:12 AM
But jk thinks:

That one was bugging me this morning, almost 24 hours after watching it. Donald Trump is (rightly if the quote is accurate) criticized for an out-of-mainstream view on "climate disruption." Then the whole -- not Charles CW Cooke-- panel makes just as outrageous unsubstantiated claims -- and they're the smart ones. Ay-yi-frickken-yi.

I have seen the exact TED talk to which our I-play-an-astrophysicist-on-TV actor refers. Elon Musk draws a red 10 x 10 mile square in New Mexico and claims that much solar panels (no doubt purchased from him at generous subsidy but am I wandering off topic?) would power this whole great nation. Umm, if there were wires. Or batteries (doesn't he sell batteries with generous Federal subsidies?)

All bad, no -- Ridley is great, Hans Rowling's washing machine is the greatest voice for liberty of all time -- an I, Pencil for the YouTube generation. Just like NPR it skews waaaaaay left, but something is not bad, ipso facto, because it is a TED talk. And when you do get a good one, it has credibility to lefties and millennials because of the bright red logo.

Posted by: jk at April 28, 2016 11:52 AM
But jk thinks:

Outside the political realm, Susan Cain a good TED talk on introversion.

Posted by: jk at April 28, 2016 11:56 AM

Life Imitates ThreeSources

Brother JohnGalt has said the same: Millennials love private enterprise—as long as you don't call it "capitalism."

When pollsters probe young people further about socialism and capitalism, they tend to find that respondents don't have clear concepts of these economic philosophies. To many millennials, "socialism" doesn't mean a government-managed economy but something like what we have now, only with more subsidized health care, student-loan forgiveness, and mandatory paid parental leave. Millennials were small children, if they were even born yet, when the Soviet Union dissolved. "Socialism" isn't Romania and Yugoslavia but Scandinavia, not Karl Marx and union halls but Bernie Sanders and Twitter.

"Capitalism," meanwhile, doesn't simply mean private, for-profit enterprise. It isn't a category that has anything to do with the family-owned bodega on their corner or their friend's new artisanal cupcake business or the proliferation of legal weed shops, with Tom's shoes or their local grocery or that Uber they took last night. Capitalism is Big Banks, Wall Street, "income inequality," greed. It's wealthy sociopaths screwing over the little guy, Bernie Madoff, and horrifying sweatshops in China. It's Walmart putting mom-and-pop stores out of business, McDonald's making people fat, BP oil spills, banks pushing sub-prime mortgages, and Pfizer driving up drug prices while cancer patients die. However incomplete or caricatured, these are the narratives of capitalism that millennials have grown up with.

But nanobrewer thinks:

An old friend once uttered a phrase that's stuck with me*, and I employ often: "I'm a fierce advocate for free enterprise."

This needs to become part and parcel of the GOP playbook, as does this statement from the estimable (sorry, it's PowerLine who's upgraded and turbocharged their Flash-ups)
Dr. Steven Hayward:

We should be honest: we—our cause, our movement—became complacent. We became too narrowly focused on policy studies to the exclusion of the sustained public argument about the principles and practices of a free society that were the predicate of policy reforms. We forgot the “public” part of “public policy” studies.... [and put] increasing emphasis on the nuts and bolts of how to privatize rather than why to privatize.

* As we say in the hardware world: bad engineers borrow or copy; good engineers steal.

Posted by: nanobrewer at April 28, 2016 11:57 AM

more thought on bathroom wars

Had a hard time with a category for this, but reckon it outta include Culture Wars, and perhaps Donkey Rescue.

1st: we cannot allow such a travesty as bathroom-choice via Gender Identification to go unchallenged. It's simply ridiculous, "absurd" as my preferred candidate says, and a greased-up precipice hiding as a slippery slope. It's another route for leftism to destroy sensical standards.


2nd: I side with JK's inference that it will abide predation, and if not conclusively proven, I think the case must be made is this really worth it?. I don't think all the stats summed up in this emotional editorial are fully true and vetted, but agree strongly with her conclusion:

it is nothing short of negligent to instate policies that elevate the emotional comfort of a relative few over the physical safety of a large group of vulnerable people.
the priority ought to be finding a way to keep everyone safe. I'd much rather risk hurting a smaller number of people's feelings by asking transgender people to use a single-occupancy restroom that still offers safety than risk jeopardizing the safety of thousands of women and kids with a policy that gives would-be predators a free pass.

The simple solution is single restrooms; there are plenty already. The complicated solution is to make the case in today's hypersensitive media space. And, yes, perhaps rant also fits, as I have two daughters and am already thinking about the local rec center's locker room!

But johngalt thinks:

What's all this talk about solutions? We have and always will have a solution: boys/girls. Men/women. Guys/dolls. Hombres/senoras. Use whichever you want, as long as you look like you belong there. Otherwise market forces will take over and a cop will be called. Even then, do your business fast enough and the worst you'll receive is an admonishment.

This issue isn't about solutions or even fairness or discrimination. It is about transformation. Personally I think it is an overreach by the left - nearly every other transformation in the name of multiculturalist relativism has passed by with relatively little backlash. But make a big deal out of letting guys go in the ladies room and you've pissed off (pardon the pun) the wrong demographic.

Most of all I'm curious which self-serving position Hillary has/will (if she dares) take on this.

One last pun: This too, shall pass.

Posted by: johngalt at April 27, 2016 2:30 PM
But nanobrewer thinks:

Left unanswered this becomes another club, labeled "Hate", with which to beat the right and its supporters into submission... it needs to be ground down.

Posted by: nanobrewer at April 28, 2016 11:00 AM
But johngalt thinks:

I challenged that notion in the "All toilet, no humor" post. Don't we just play into the left's hands by fighting back? Trying to "grind down" the leftist opposition's looney ideas? We look petty and reactionary and uncaring - all the things that they unfairly paint us as.

I suggested we accede to their plans whenever possible, the loonier the better, as long as they were explicitly labeled "Brought to you by: Democrats." When normal people realize the looney ideas are abnormal and want "change" they'll know just who to blame.

Posted by: johngalt at April 28, 2016 12:18 PM

April 26, 2016

personal experience on healthcare

I tried to post this on FB, but it doesn't like .pdf files, so I'll post here, perhaps refine it a bit and either re-post or point my FB page here, with a private post.

It starts with the letter I got back in the winter from the board of the CO Health Co-Op (CH-OP) when their little socialist venture got the ax: and now I'll try posting up a .pdf version here.

CO-OP Healh Failure.pdf

But nanobrewer thinks:

Hmm, that's not how I wanted it to look. Can others download the file?

Posted by: nanobrewer at April 26, 2016 7:19 PM
But jk thinks:

Looks good to me! You could download by right-clicking or just click the link to open in a browser that can handle pdf.

Posted by: jk at April 27, 2016 10:05 AM

Quote of the Day

I am not disrespecting the talent of the engineers who achieved this feat. Flying a solar plane around the world is a remarkable achievement. But this achievement does not demonstrate the technology is viable. What it demonstrates is that solar is a ridiculously poor source of power. A solar collector the size of a 747 just managed to collect enough electricity, to keep an incredibly lightweight plane aloft. -- Eric Worrall
But johngalt thinks:

Just imagine the luggage surcharges on Super Duper Solar Airways flights!

But hey, at least travelers will feel good about "doing no harm" to the atmosphere. Heck, flying solar is even better than walking, with all of that CO2 "pollution" that their increased respiration would bring.

Posted by: johngalt at April 27, 2016 2:07 PM

Three Cheers for the Sucky GOP!

I had an unfruitful argument with a moderately-anarchist-public-choice friend on Facebook. This person is a brilliant champion for liberty, but way too cool for a stodgy political party.

It's late and it's desperate, but I shared this Harsanyi piece (all hail!). If nothing else, it's a superb headline:

The GOP Sucks, But It’s Not As Bad As Everyone Thinks

the rest is pretty good too. He lists the defenses of the Grand Ol' Party we're both tired of making to Tea Partiers and Libertarians.
As far expectations go, Republicans deserve blame for making promises they couldn't possibly fulfill--including the notion that they could repeal Obamacare. Then again, overpromising is not exactly a new political trend. And it's not as if voters flock to candidates who tell them unvarnished facts about this cruel world of ours.

But did Republicans do nothing but surrender the last eight years?

Spoiler alert: no. Read the whole thing. I mean, if you want to and have time. And if you're not in Venezuela with no power.

But nanobrewer thinks:

This is an awesome column; needs posted, quoted, referenced and re-tweeted! I'd have put the title "GOP may suck..." but I quibble.

Here's a quick laundry list:

put an end to a bipartisan gun-control legislation. They stopped the so-called Paycheck Fairness Act — twice — and the Paying a Fair Share Act of 2012, which would have raised taxes. They stopped the American Jobs Act bailout and the authoritarian Card Check stuff. They stopped the DISCLOSE Act and the sequestration replacement and the Keep Student Loans Affordable Act of 2013 and the across-the-board federal minimum wage efforts. Republicans sued and won when Obama abused his power by naming recess appointment NLRB

Posted by: nanobrewer at April 26, 2016 11:42 PM



Like Someone in Love

Johnny Burke & Jimmy Van Heusen ©1944

Live at the Coffeehouse dot Com


April 25, 2016

Back Home Again, In Indiaaa-naaa

In my Gliding into Cleveland with Donald post, detailing the progress Trump needs to be the GOP nominee before Republican delegates have anything to say on the matter, I documented that Trump needs to: "Win Indiana and most congressional districts, 45 of 57 delegates."

I glossed over that state at the time, choosing instead to focus on how unlikely an eventuality had Trump sweeping Montana and South Dakota. But Nate Cohn writes that Indiana may be fertile soil for Mr. Cruz. Even more so today, with the announcement that Kasich has agreed not to campaign in Indiana (in return for a similar pledge from Cruz in Oregon and New Mexico.) While things look good and, as I said, getting better for Cruz, Cohn says it's hard to be confident about predictions in Indiana, given its unique qualities. But...

What's clear is that if Mr. Trump wins Indiana, the drama continues on to California; if he doesn't, even California almost certainly won't be enough for him to secure the nomination by primary season's end.

UPDATE (jk) I do not like to crash others' posts. Unless it is important. And:

UPDATE: (jg) It's impossible to top the Glen Campbell vid but in the interest of telling the whole story, here is Club for Growth's 30 second spot that is featured in its $1.5 million Indiana ad buy.

While it's not one of the best political commercials ever made, it is blunt. It can't hurt in the effort to prove Why Today's Romp by Trump Doesn't Matter.

The month of May is going to be a death march for Donald Trump.

He's not going to win Indiana. Trust me on this one. Internals matter, public polling (as we have witnessed over and over again since January) does not.

So Trump, according to theresurgent dot com, and ...

The 39% that support Trump, and by that I mean the about 15% of Republican voters who rarely vote and the Independents and Democrats who crossed over in open primary states, might just find themselves on the morning of June 8th thinking, "Wait, I thought we'd won this?!"

Then the whining and flailing that "they stole it from me" will really heat up. But as any racing fan knows, it doesn't matter who leads the race until they cross the finish line. Just ask Silky Sullivan!

But johngalt thinks:

Jazz... Guitars... Right-wing politics!

Posted by: johngalt at April 25, 2016 4:51 PM
But jk thinks:

It'll never sell.

Posted by: jk at April 25, 2016 4:56 PM

A Little Sharanskyism

You don't have to invade other nations and instill Madisonian democracy. But is it too much to ask that the President advocates for freedom? Here is what disturbs me about the President in unkind but not overwrought language.

Almost alone amongst US presidents, Obama has turned his back on this fundamental duty, and instead showed peoples who are struggling for sovereignty the superior sneer of the cold, haughty academic that he really is. When the Iranian people protested against the theft of their June 2009 election by Mahmoud Ahmadinejad, and took to the streets at the cost of around 100 dead and 4,000 arrested--the exact figures will never be known due to government censorship--President Obama merely stated that the difference between Ahmadinejad and the opposition leader Mir-Hossein Mousavi "may not be as great as has been advertised" and ordered American diplomats to do nothing to support Iranian pro-democracy campaigners.

Similarly, during the Arab Spring, the Libyan Uprising, the annexation of the Crimea, the Syrian civil war, and the Ukrainian insurgency, Obama has in each case carefully identified the pro-democracy forces and then either denied them American support or actively undermined them..

From historian Andrew Roberts’s “Barack Obama has turned his back on democracy” for the website CapX, April 22: Quoted in WSJ's "Notable & Quotable."

All Hail Taranto!

What's that? No All Hail Taranto all week? Well, it is only Monday.


Good Randian Case against Anarcho-Capitalism

I am heartened and fortified that Randy Barnett -- the author of the most compelling case for anarchy which I have ever encountered [Review Corner] -- has used his most recent book to advocate for The Republican Constitution. I had been using the non-euphonious "Constitutional Minarchist." My meaning is that the original Constitution was well structured and ratified by many serious-minded liberty lovers. So, if I quibble with a phrase or an Article I, Section 8 power ("coin money: **cough** "regulate the value thereof" **cough, cough**), I'll take it in toto.

Today, I spill across this fine Harry Binswanger column which argues against in Objectivist grounds.

"Free competition works so well for everything else," these anarchists say, "why not for governmental services, too?"

But that argument comes from an anti-capitalist premise. Like the Marxists, who prate about "exploitation" and "wage slavery," the anarchists are ignoring the crucial, fundamental, life-and-death difference between trade and force.

Pretty good if you like such things.

April 24, 2016

The Suicide of Venezuela

As they act out Atlas Shrugged Part III 3308 miles to our Southeast, turning off the lights to save fuel in the West's most energy rich nation.

No, national suicide is a much longer process -- not product of any one moment. But instead one bad idea, upon another, upon another and another and another and another and the wheels that move the country began to grind slower and slower; rust covering their once shiny facades. Revolution -- cold and angry. Hate, as a political strategy. Law, used to divide and conquer. Regulation used to punish. Elections used to cement dictatorship. Corruption bleeding out the lifeblood in drips, filling the buckets of a successive line of bureaucrats before they are destroyed, only to be replaced time and again. This is what is remarkable for me about Venezuela. In my defense -- weak though it may be -- I tried to fight the suicide the whole time; in one way or another. I suppose I still do, my writing as a last line of resistance. But like Dagny Taggert I found there was nothing to push against -- it was all a gooey mess of resentment and excuses. "You shouldn't do that." I have said. And again, "That law will not work," and "this election will bring no freedom," while also, "what you plan will not bring prosperity -- and the only equality you will find will be in the bread line." And I was not alone; an army of people smarter than me pointed out publically in journals and discussion forums and on the televisions screens and community meetings and in political campaigns that the result would only be collective national suicide. Nobody was listening.

But johngalt thinks:

And all of this is... for who? For what?

Some charismatic leader who says he knows the best way for everyone? That he is smarter and more caring than his rivals?

Some promise of "equality?" A "hand up" to the less fortunate, living in the shadow of the success of others - without any regard for the different *actions* taken by the haves and the have nots?

Look in the mirror, America.

Posted by: johngalt at April 24, 2016 2:52 PM
But jk thinks:

That could never happen here.

I don't know why they have zero fear of our government. But. They have zero fear of our government. Like everybody in Italy, Germany, Russia, Japan, North Korea, Cuba, and Venezuela are somehow awful people.

Posted by: jk at April 24, 2016 3:19 PM
But Terri thinks:

Are you and Riza going to the Lincoln Day Dinner by any chance?

Posted by: Terri at April 25, 2016 10:18 AM
But jk thinks:

@Terri -- no plans to. Who what where When? Boulder County?

We are going to Liberty on the Rocks -- Flatirons tonight.

Posted by: jk at April 25, 2016 12:25 PM
But Terri thinks:

Lincoln Day Dinner next Saturday April 30th at 6:30pm in Longmont at the Plaza Event Center.

Bill Whittle (yay) is speaking.
$100 for VIP tickets which get you in at 4:30 (not sure what else)

Silent auction at 6pm

I haven't bought a ticket yet, but I love Mr. Whittle. RSVP at BOCOGOP.org or call 303-498-9716 by Friday April 22nd LOL

So I/we would squeeze in, if so. Just checking if I'd know anyone.

Posted by: Terri at April 25, 2016 1:20 PM
But johngalt thinks:

I was planning to go, since I too would love to hear Bill Whittle in person, but decided to save the money. I'd also like to hear Dinesh D'Souza at the Larimer LDD on June 11, but it's pricy too - $90. http://www.larimergop.org/LDD2016

But if there were a 3Sources contingent I could justify an expenditure from savings, for one or both. ;)

I do know my brother is going to the BoCo dinner.

Posted by: johngalt at April 26, 2016 2:07 PM

April 23, 2016

Pre Review Corner

I mentioned this in a comment way down the page, but. do not wait for Review Corner. Run out today and buy: Our Republican Constitution: Securing the Liberty and Sovereignty of We the People by Randy Barnett.

PM Margaret Thatcher is rumored to have thrown down a copy of Hayek's "Constitution for Liberty" and declared "This is what we believe!" Well ThreeSourcers, I hate to be presumptuous, but this is what we believe.

I am highlighting every other paragraph and will be unable to get 3% in a Review Corner. But here is a taste:

At its core, this debate is about the meaning of the first three words of the Constitution: "We the People." Those who favor the Democratic Constitution view We the People as a group, as a body, as a collective entity. Those who favor the Republican Constitution view We the People as individuals. This choice of visions has enormous real-world consequences.

If that doesn't get you interested, then forget my recommendation. Move along.


Posted by John Kranz at 1:53 PM | What do you think? [0 comments]

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