The UNOS vs. DHHS Controversy
NOTE--This dispute occurred during the second term of the Clinton Administration, and was the object of disagreement between some transplant centers (headed up by Tennessee Republican Senator Bill Frist, as I recall), and the DHHS and its proposed guidelines for reallocation of livers, which was finally passed in late 2002 under Bush and has since proven to be a success, as predicted by Donna Shalala and a study by the IOM. Clearly it was just an attempt to discredit the Clinton Administration and had no basis in fact, as you will read below. I include it as an historical reference.

The UNOS vs. DHHS controversy is perhaps the single most important issue facing (some) transplant candidates, and like smoking, in some ways represents the worst that Capitalism has to offer--The Big Dog Has to Eat. Some basic facts from a patient's point of view:

1. Current UNOS guidelines are inadequate--I know, easy for me to say, but the fact remains that some organs are covered by a Status Level system--i.e., hearts and livers--that allows sickest patients to get transplanted first, but most aren't--lungs, for example--which effectively creates a discriminatory situation whereby patients with some diseases die while others are saved, only because of the specific organs involved. Plus, you can literally get a transplant faster in some areas of the country and die waiting in others, depending on the organ you need and where you live.

2. This entire debate is currently about Status Level System-controlled livers only.

3. Representing a group called the Coalition of Major Transplant Centers--hereafter called the CMTC--Congress has resisted efforts of the current administration, in particular Donna Shalala of the Department of Health and Human Services (DHHS), to reorganize UNOS organ distribution in order to transplant the sickest patients first, regardless of geographical boundaries.

4. A recently published study by Institute of Medicine--contracted by Congress in an attempt to back up its efforts to resist reorganization--of 68,000 liver transplants, actually validates the efforts of the Clinton administration to better organize organ distribution.

5. Little mention has been made of non-Status Level organs, such as lungs--which I am interested in for obvious reasons--making me wonder how much this will really improve anything for the vast majority of patients needing a transplant if implemented.

6. For the record, the CTMC currently consists of the following institutions: University of Alabama at Birmingham; University of Wisconsin at Madison; Fairview - University Medical Center, Minneapolis; University of Michigan; Ohio State University; Washington University Transplant Surgery, St. Louis; St. Barnabas Health Care System, New Jersey; The Health Alliance of Greater Cincinnati and Children's Hospital; Medical University of South Carolina; University of Colorado; Clarian Transplant Center, Indianapolis; University of Tennessee, Memphis; Froedtert Memorial Lutheran Hospital, Milwaukee; Vanderbilt University; and University of Texas at Houston. These institutions seem to be motivated by the fear that reorganization would strangle their business.

7. Notably, the CTMC does NOT currently consist of some transplant centers that I would consider the best of the best, namely Johns Hopkins, Barnes Institute, University of Pittsburgh, Stanford, UCSF, University of Washington, INOVA Fairfax, and others I like such as UMMC, Shands Institute, etc. These are apparently the centers that the CTMC feels would take their business should reorganization be put in effect.

8. Whether or not it is true that reorganization will penalize smaller transplant centers--and the IOM study shows that it will not--it is wrong to penalize patients with what is essentially a turf battle.

There is a lot about this controversy that is not being said, and self-interest rules so anything you read should be taken with a grain of salt, but as a transplantee with an on-going interest in these matters, I would make these recommendations (for what it's worth):

A. Have a Status Level System for ALL life-sustaining organs or have it for NONE.

B. Spend money on improving Organ Donation Awareness, NOT on preserving self interest.

C. Pass a Presumed Consent Law for the United States--make it Federal.

D. Make performance numbers for transplant centers easier to locate and understand--searching UNOS in an effort to figure out how regions and zones work and then locating centers that fit your requirements is needlessly difficult.

IMPORTANT NOTE: If you have an adequate supply of donor organs, this issue goes away. Of course, then politicians would have less to fight about and maybe we'd begin to see some real progress. Oh well, it was a thought. Again, as with smoking, lives are a small factor in a much bigger struggle that has more to do with money than with serving the public's interest. And while this issue is difficult to understand, just for making the entire subject more visible I salute Donna Shalala and the Clinton Administration.

ONE LAST CHILLING THOUGHT: Remember that U.S. News and World Report TELLS you that REPUTATION comprises 48% of the formula they use for rating the "Top Hospitals in the United States". Obviously, they aren't listening to the families that lose over 130,000 relatives each year to surgical errors, almost all of which go unreported. Here's a major wake-up call--hospital error is the fifth leading cause of death in the United States.

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