Life imitates art: Duchenne Muscular Dystrophy and the FDA

It seems that some form of the drama of Evolve is actually playing out: the FDA has outlined a way for a Duchenne muscular dystrophy drug to gain accelerated approval.

There is a lot to say about this – an entire novel, in fact – so I won’t go into most of my commentary here. Here is one of the key points (from the article):

How much weight should the agency give to the voice of parents and patients, who often are willing to shoulder outsize risks?

Really, the way to look at this is: how many DEATHS does the FDA regulatory process cause?

We tend to focus on how many lives a drug saves because it is safe and effective (those are the FDA mandates, to ensure that drugs are safe and effective. How well do they do given that there are frequently recalls and revisions of their initial findings?). What always gets lost – in part, because it is essentially impossible to quantify – is how many people die because they cannot access drugs. See, for example, Dallas Buyers Club.

As you think about this and form judgement, remember, we’re almost always talking about adults and we’re usually always talking about life-threatening diseases; and think of all the things that you have in your house that COULD kill you or cause you harm, but which don’t (because they work the way they are supposed to) and which aren’t as heavily regulated as drugs.

-JD Cross

 

San Francisco housing solution: decentralized knowledge

Tech Crunch writer Kim-Mai Cutler has a great and wonderfully comprehensive article on the problems San Francisco is currently facing regarding housing, gentrification, and culture.

As she points out in numerous of her bullet points regarding aspects of the overall problem, it’s a complicated problem.

Well, guess what, we humans have evolved a wonderful mechanism for dealing with complicated, many body optimization problems. And what is that mechanism? It’s called a market. And why is San Francisco broken? Because it is completely non-market-using when it comes to housing and property usage. San Francisco is as ridiculously bureaucratic as it gets on these issues and that is the problem and undoing that is the solution.

It’s actually quite simple, really, as her Trulia home prices versus building permits graph shows (about 1/3 of the way into the article).

If you read the article, can you come to any conclusion other than that government intervention has completely destroyed San Francisco? Let me know if you do.

Markets are amazing things if left to function mostly freely. I, Pencil is the canonical example.

-JD Cross

 

Awesomeness: clones

A breakthrough in cloning stem cells.

This is awesome in every possible way.

And the controversial possibility of human cloning…absurd. When has having twins or triplets been controversial? Well, guess what, this is the same. Oh, you don’t think it’s the same thing? Well, guess what, you’re wrong.

This is awesome because it will make people’s lives vastly better.

-JD Cross

 

A real healthcare market?

Could doctors start behaving as they ought? As salespeople for their services and for products, who, at the end of the day, must convince customers (patients) to spend for those services? Maybe. At least it’s being discussed.

It’s not entirely doctors’ fault that the healthcare system is a completely dysfunctional market. It’s the entire nature of the healthcare system and in particular the role of government in creating perverse incentives in that system. Such perverse incentives include: requiring emergency room treatment to be administered if somebody shows up, granting massive tax breaks to health insurance costs, insurance regulation that requires certain treatments to be covered and fixes or limits what can be charged for treatments, and programs like Obamacare.

But doctors are one important part of the problem. They ought to be salespeople, first and foremost. Any craftsman or tradesman or professional, if they want to be successful needs to learn some art of selling. Lawyers, software engineers, financial advisors, plumbers, etc. Doctors are only different in that they sell health care, which, for all sorts of stupid reasons, people don’t think is a product nor functions in a market like every other product and service that has ever existed.

And part of the reason doctors are an important part of the problem is because they clearly don’t understand that there is a problem. From the article:

“There should be forces in society who should be concerned about the budget, about how many M.R.I.s we do, but they shouldn’t be functioning simultaneously as doctors,” said Dr. Martin A. Samuels, the chairman of the neurology department at Brigham and Women’s Hospital in Boston. He said doctors risked losing the trust of patients if they told patients, “I’m not going to do what I think is best for you because I think it’s bad for the health care budget in Massachusetts.”

Yes – doctors should be the ones concerned about the cost. As a salesperson, you don’t lose somebody’s trust if you prevent clear cost-benefit analysis of your products; you lose somebody’s trust if you lie, sell crap, or are a jerk. Amazon has my trust because they tell me exactly how much something is going to cost and tell me all of the benefits or disadvantages of the product (largely through completely uncensored, unregulated ratings and reviews from other buyers). Furthermore, the guy above is clearly thinking about the government’s budget, not the patients’. The disintermediated payer problem is perhaps the biggest problem in health care, at least with respect to health care functioning as a proper market.

And this:

Generally, Medicare is not supposed to consider cost effectiveness in coverage decisions, and other government attempts to do so are susceptible to criticism as rationing.

is a big issue and part of the exact reason why government should not subsidize health care. We should have doctors selling products to patients and patients more directly paying the cost. But IF government is going to provide insurance (Medicare) or subsidize cost or otherwise completely screw up the free market-ness of health care, then government ought NOT to ration care. The argument could be constructed like this:

1. Medical care should not be rationed (by a third party; that is, it should ONLY be rationed by the payer’s budget).

2. If the government is involved in medical insurance/care, then medical care will be rationed.

3. (conclusion) the government should not be involved in medical insurance/care.

I don’t see how you can argue that 2 is incorrect. You can certainly argue that 1 is not correct, but then you’re saying something like health care is a right. It’s not. It can’t be. Why not? Because then a whole lot of people become enslaved to those needing medical care and one person’s rights cannot – as proper rights – infringe upon another person’s rights.

And, there’s more, but I’ll stop here for now…(if you do want more, read Evolve, because this is what a lot of the book is about.)

-JD Cross

 

Sluggish Cognitive Tempo

It’s not the children who have this (non)disorder. It’s the psychiatrist who wants to make it a disorder who has it.

As a dissenter notes (emphasis in original article):

“Sluggish Cognitive Tempo may possibly be the very dumbest and most dangerous diagnostic idea I have ever encountered,” he wrote.

 

This is what passes as science these days? And that’s the problem.

-JD Cross

 

Awesomeness: the new genetic engineering

They’re not calling it genetic engineering – and I can’t blame them, given the widespread irrational opposition to the term – but that’s what they’re doing: creating better crops smarter than ever and faster than ever.

As I point out in Evolve, all breeding processes seek to achieve (amongst other things) at least viable if not better offspring. Being smarter about it: through selective breeding (article above) or directly engineering the genome or whatever just makes sense.

-JD Cross

 

Ecology: complex systems are complex

This:

Researchers who allowed white-tailed deer to feed on plots of saplings while keeping other plots off-limits found that the healthiest communities, where young trees were diverse and vigorous, grew where deer foraged.

It’s a counterintuitive result, given the voracious reputation of deer — but perhaps it shouldn’t be, given the interdependent elegance of ecology.

“Seeing a positive effect was really surprising,” said Parker. It also has a potentially thorny implication: often people try to protect habitat from browsing, but that may backfire. “If we protect plants from browsing, maybe we’re eliminating the very factor that makes diversity work,” he said.

“We have a general sense of the way things work,” Parker said, “but in terms of nuance and complexity, we’re still in the infancy of ecological study.”

Yes.

Though, I think it would probably be more accurate for Parker to say: we have no sense of how things work. I mean, just look middle quoted paragraph. He can’t possibly have any idea of how things work if such a “basic” belief turns out to be wrong.

-JD Cross

 

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