Wednesday, May 04, 2005

Thuggery in a Charitable Cause is Still Thuggery (Letter to the Editor)

Hugh Hewitt raised the issue of a young woman named Amanda and her battle with cancer. She has gone into remission twice only to have the cancer return. Sadly, now she is running out of options. There is a drug that Amanda and her father believe will help except for the mean old drug company who won't let her have it. Mr. Hewitt entreated his audience to take up the cause and contact the company directly on Amanda's behalf. My response follows.

I recognize that I'm late to the party on the story about Amanda and it looks like you may get the satisfaction you seek with the president of Medarex contacting Amanda's father [since the segment first aired].

I was shuttling kids to and from practice last night, so I missed a lot of the discussion, and it is possible I missed a couple of key details, but I heard you read the letters from, urge your callers to contact Medarex directly, and put out a challenge to anyone who should think that the company should not just make the drug available to her. The gist of what I heard of your argument was that if what she says is true, then there was no reason to think something should be done otherwise. And apparently the reasons we should believe the letters were because a.) the way the website was done, and b.) the rhetorical question of why would her father publicize it this way if he didn't reasonably expect to be successful. Ummm, OK. Count me in the skeptical camp--even now.

The whole question of course is whether all the things claimed are completely true. Granted I may have missed it, but first, is Amanda real? Does she have cancer? Is her father real? etc. (The blogosphere is about trust you say. Yes, and the operative phrase is "Trust, but verify.") Assuming she is real, we then move on to is this really her last resort? She has had the stem cell transplant and reached the radiation limit, but has she exhausted the available chemo and bio-chemo regimens? Has she tried holistic medicine? How do we know that she knows whether CD30 is her last shot? How effective is CD30? Is it no more effective than other available options? Why has another trial been ordered? Is it because it's effective, or because there was something wrong with the first trial? Or does it simply address a patient's symptoms and is better suited as a complementary therapy? Or has it shown promise for a different condition altogether? How do we know she knows whether CD30 is effective? Can Medarex make the drug before the batch is made for the next round of trials? Will making it available for Amanda compromise the production for the next trial (anybody in early development for high tech knows this is never trivial)? How much will a special batch cost to make? Is a special batch needed? Are there really doctors who know how to administer CD30 safely and have demonstrated that? Who's going to pay for it? Is Medarex protected from litigation? Really? Is the FDA really ready to clear the way to allow the drug to be distributed to Amanda in a matter of days? What kind of precedent does this set? If this happens, how could any drug company ever deny supplying experimental drugs to desperate people again?

You see, these are a lot of questions. Questions for which I do not have answers, still. And based on their nature, there is very little point in playing the parlor game of assuming all these things are true and then asking whether someone ought to support allowing her to have the drug.

So, what do we know? We know your audience has crashed the website of interest with heavy traffic,, thereby limiting, or eliminating, a key source for verification in a timely manner. And we know you have swamped a drug company's public relations department, distracted the president of the company from actually managing the company for a while, and at a minimum, likely distracted the entire senior staff as well, to respond to the demands of you and your audience.

This is markedly different from the senate filibuster case, for example, where you likewise urged action on the part of your listeners and readers, but had been cultivating the information over hours, days, and weeks, built an incredibly compelling case, and provided widespread, verifiable sources. In these days of Pope Benedict, I must offer my charity through my use of clarity. This whole Amanda thing smacks less of a swarm in net-centric warfare and more of the pitchforks and torches of mob rule. Frankly, Mr. Hewitt, I expect more from a blogfather.

Pax tecum

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