UNOS Responds


I have written two blogs on UNOS.  1) addressing their failure to increase the number of organ donors so that it matches the need for organs and 2) their failure to properly communicate the need and to focus their communications.

I should point out that my only goal is to save lives.  I work for no organization, company or group that would benefit monetarily or otherwise from anything I say.  The only benefit I want is to increase the number of donors.  If my thoughts and suggestions are offensive to some, I appologize, but I fail to see how ideas can be offensive when posed in the light of the current organ deficiency crisis.   Any idea should be well considered before it is rejected.

UNOS, however, seems to find my quest to increase organ donors as offensive and somehow disloyal.  And —in response to what I have written, offer nothing but lame excuses as refutation.  They seem to think that because they used to be one of my clients (mid 90’s) I should not be writing blogs that are critical of them.  Well, they are not a client now, nor have they been for almost a decade (I don’t suppose they will be anytime soon either).  They are not paying me anymore and I certainly owe them no more loyalty than they owe me.

We both want the same thing, “to stop the dying.”  The difference is that UNOS is satisfied with the status quo, which is the growing gap between the number of available organs and the number of people who need them.  They have advocated the same altuistic program since their first government contract 22 years ago and have ignored the fact that it simply doesn’t work.  I, on the other hand, only want to see them show some real concern for the “listed” patients and at least try something new even if it is only a small trial in one small region.  Or –how about taking a new position that may need congressional approval and fighting for it.  I don’t hear UNOS fighting for anything except, perhaps, their next contract.

Please take the time to again read my Blog, “UNOS — A Failure at Increasing Organ Donantion.” There are several comments on that blog but I would like you to read Joel Newman’s (UNOS communication department) comments and my response.  Then I’d like to hear your thoughts.  I have seen nothing in Mr. Newman’s comments that even hints at doing something new.  What I see is a defense of a broken systm and that they are very busy.

I think we all agree that increasing organ donation is not only necessary it is critical because we are in a crisis where there’s no end in sight for the dying.  I think we can also agree that if you are not part of the solution you are part of the problem.  Right now UNOS respresents the problem and they must begin to seriously consider the many solutions offered by scores of thoughtful well-meaning people.  Either that or we will just watch the body count rise.

Posted on February 22, 2008, in Blog responses. Bookmark the permalink. 2 Comments.

  1. Bob: You asked for reactions to UNOS’ responses to your blog post. Here is one. Joel Newman wrote: “You talk about the OPTN/UNOS Ethics Committee and its views on various approaches. I once staffed that committee (I was not a participant, but an organizer and a scribe). In its white papers, the committee tried to tease out the various pros and cons and offer some tentative conclusions. Any action from there is probably on a public scale – organ donation is governed by law, not policy. And issues of law are beyond our scope of control.”

    Organ donation may be governed by law, but organ allocation is governed by UNOS policy. The law gives UNOS the power to change its own allocation policies.

    UNOS should allocate organs in a way that increases organ donations. It should allocate organs first to registered organ donors, because that will incentivize non-donors to become donors.

    UNOS has the power to give an allocation preference to registered organ donors. Their ethics committee acknowledged this in their 1993 white paper “Preferred Status for Organ Donors”. The committee recommended further discussion before implementing any specific plan. That was 15 years ago. To my knowledge, UNOS has led no discussion on this idea. Over 50,000 people on UNOS’ transplant waiting list have died since 1993. Many of those people would still be alive today if UNOS had changed its allocation rules to give organs first to registered organ donors.

    In the absence of UNOS action, anyone who wants to donate their organs to other organ donors can join LifeSharers at http://www.lifesharers.org or by calling 1-888-ORGAN88. Membership is free. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

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  2. In adition to the circumstances you mentioned it would seem to me that if you were a consultant for UNOS in the mid-1990s and you received your heart transplant in 2008, you really did not have the same stake in the matter at that time you do today. Its like we can all agree that it would be horrible to be the parent of a child or even a child that has gone to St. Judes. So, we might do what we can to raise money for that organization. However, if you, a friend, or relative has been in that situation they would more than likely be working twice as hard to raise money for the organization.

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