Touching Me, Touching You

In New York right now there's news about one family's attempt at receiving a kidney donation. After 10 months renal failure following a rare cancer, the sister of Neil Diamond (not the singer) placed an add on Craig's List on his behalf.

Here is one early report of the effort, and I've since found two new pleas for kidneys. The story has been picked up by mainstream New York media.

(Aside note: Not to make light of their situation, but if Diamond's eventual donor is named Caroline, I think you'd have to call it poetic justice).

This Craigslist post is a new wrinkle in the method employed by Todd Krampitz this past August. Krampitz caused outrage when he bought billboard space and took out ads, all asking for a liver. Some feared we were heading toward a system where the wealthy could publicize their need for an organ, but the poor would suffer in anonymity.

Yet the Diamond family has achieved at least the publicity that Todd Krampitz did, even though posting to Craig's List is free. I suspect, however, the "me-too" posters are less fortunate.

There's lots of potential stories here:

1) the New York Daily News editor replacing "ailing" with the misleading "dying" in the front-page story (Diamond's condition is managable).

2) the fact that Krampitz, as far as we know, has a malignant tumor that will likely claim his new liver in time. Did the donors know? Do people lining up from Diamond know he's not dying (see #1)

3) Dave Winer tried something similar on his blog last year, for friend Dave Jacobs. The attempt failed to catch on and Jacobs is still waiting for a donor. Is online solicitation really the way of the future, or simply a case of using the right publicity at the right time?

4) Will any of these public cries for help raise awareness about the shortage of organs? Or, better yet, lead to any improvements in organ recovery?

I was fortunate to recieve some informed commentary from a Gift of Hope coordinator. He has written before on the details of organ recovery (pdf, page 6).

He wrote a lot to blogborygmi, but Haloscan cut it off. Also, it was the comments to an unrelated post. So I'm reprinting what I can here, because his expertise deserves at least as much space as my armchair meanderings or the Daily News' sensationalism (emphases mine):

Private publicity campaings since they are cheap, and at least in the case of Mr. Krampitz effective are here to stay, but they shouldn't be dismissed as being without consequence.

The current UNOS policy on "directed donations" allow a donor family to name an individual to receive a specific organ. If the organ is not a medically suitable match it is then allocated according to UNOS allocation policy. (A family cannot btw discriminate based on age, sex, race, religion etc., nor can they demand that a class of patients such as those with HIV or alcoholic cirrhosis be excluded as a possible match).

There is no requirement that the donor or their family have any pre-existing relationship with the potential recipient.

The donation/transplanatation community is in an difficult position, because we need publicity to raise awareness of the need for families to consent to donation, and there are few effective options for touching the hearts and minds of the public beyond attaching a real individual's face and story to a faceless group of 87000 people. Private publicity campaigns certainly raise awareness.

To further complicate mattters, each cadaveric donor, on average donates 3 or 4 organs (up to 8 are possible) and many more benefit from tissues recovered from such a donor. Aside from the "directed donation" of a single organ, many more can benefit from the donor's gift. So while one organ may be allocated "outside the system", several more would be used for those determined to have the greatest need.

It is possible (though hopefully unlikely) that creating a policy denying the family the option of "directed donoation" to someone they have no relationship with could cause them to refuse donation altogether, which helps nobody.

If things are left as they stand, there is a good chance that public pleas for a directed donation will become so commonplace that they will fade into the noise of the information age and lose their impact. Another outcome is that such pleas may cause the American public to lose faith in the allocation system altogether.

We have reached a point in the shortage of donor organs where transplanting the entire waiting list of 87000 is a mathematical impossiblility. Our only hope is to continue to refine the system to prevent death on the waiting list by transplanting those with the most urgent medical need first. Poll after poll of the American public confirms that this is the way they want the allocation to be done. By circumventing the allocation system through directed donations on a large enough scale, this barely feasible goal will become impossible.

The policy on directed donations must change, sooner than later, before either scenario can come to fruition. But we can't seem to get across even the most basic of messages in many cases, and trying to get the public to understand that such a change is for the greater good would be difficult indeed.

Looking at the statistics, I'm inclined to think the transplant situation in the US can't get much worse, or at least, these "outside-the-system" efforts won't hurt it. Also, I'm heartened that the UNOS people seem interested in what polling Americans on what they prefer, and try to get the public to understand the donation.

I think it's pretty clear what allocation system the Diamond and Krampitz families prefer, if UNOS is polling them. And really, whose voices matter most in these situations: those of the patients and donors, or those of the masses, who UNOS can't seem to educate anyway?

But my few encounters with the transplant process pale in comparison to what the UNOS people endure every day. I just hope their frustrations aren't blinding them to radical but promising solutions.