Saturday, December 15, 2007

"Terminally Ill" Patients Bucking the System?
Gail Heriot

This is a significant story about people taking the initiative in their lives.  I'd heard about the story of Ben Williams from a friend of mine.  I'd not heard about the case of the young child in the story.  May God help those who help themselves (and their children). 

Related to all this, of course, is the debate over legal access to "experimental" drugs.  The D.C. Circuit's opinion in Abigail Alliance v. Eschenbach is here.  The web site for the Abigail Alliance is here.

https://rightcoast.typepad.com/rightcoast/2007/12/terminally-ill.html

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Gail Heriot
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Comments

Oh, brother--here we go again...

For the umpteenth time: for every intelligent, sensible-but-desperate amateur medical pioneer, there are thousands of stupid, gullible, and equally desperate patients who need only the barest encouragement to ignore medical science altogether and fritter away their remaining health and savings on quack remedies of all kinds, enthusiastically proferred by the worst sort of predatory charlatans.

I'm glad that things have worked out for a few of the mavericks, and that they've been willing to work with oncological researchers to ensure that something rigorous can be learned from their experience. But the idea that this might be a model for the terminally ill population as a whole to follow saddens and horrifies me. And any relaxation of the drug approval process designed to assist the Ben Williamses of the world will impoverish, immiserate, and ultimately kill far more people than it will ever save.

Posted by: Dan Simon | Dec 16, 2007 9:45:33 AM

And, Dan, for the umpteenth time, these are terminally-ill patients. This is no tried and true treatment for them. If there were, they wouldn't be terminally ill. The problem is that their highest and best use to medical science is to act as lab rats for medical science--i.e. to help researchers determine scientifically whether "Experimental Treatment No. 1" might have any beneficial effect (however small) on their condition. But their best bet for survival (again however small) is to use Experimental Treatment No. 1, 2, 3, 4, and 5 together. There's a conflict of interest here. Medical researchers want nice clean studies in order to have the best possible information in the future. But terminally ill patients, quite undertandably, are more interested in extending their lives. They ought to be able to act on that interest. They are not public utilities.

I understand your concern that some people will be taken advantage of. That's true. But the problem is not unique to the medical situation. It's the cost of living in a free society anywhere in the universe. In some ways the problem is less severe in the case of terminally ill patients for whom there is no tried and true treatment. If they are going to die anyway, is it so terrible that they die with their boots on? Where they're going, they won't need the money.

Posted by: Gail | Dec 16, 2007 12:24:09 PM

I'm curious--how many terminally ill patients do you think are in this predicament, being knowledgeable enough to come up with a new and genuinely plausible "cocktail" remedy, but somehow unable to persuade a single cancer researcher that it's plausible enough to be worth a small study? After all, America isn't exactly crawling with amateur oncologists capable of distinguishing a plausible treatment plan from a crazy one, and the few that exist would, one expect, be able to find researchers willing to follow up on their hypothesis.

On the other hand, America *is* crawling with medical naifs incapable of distinguishing snake oil salesmen from serious drug researchers, and snake oil salesmen ready to try to persuade them that they're actually serious drug researchers.

Perhaps I can make more headway here if I recast my argument in terms of market incentives. Medical researchers and terminally ill patients have their incentives well aligned: both want to find effective cures. One would therefore expect lots of co-operation between them. Terminal cancer medicine *marketers*, on the other hand, are in a classic "market for lemons": they can always come up with new remedies to market, and the dupes who took the last ones aren't even in the market anymore. They thus have nearly zero incentive, absent government regulation, to waste effort finding effective remedies.

Posted by: Dan Simon | Dec 17, 2007 3:32:07 PM