JUDICIAL INTRUSION INTO ORGAN TRANSPLANTATION?

Desperate transplant candidates and families caught in the vast organ shortage in the U.S. should not be criticized for turning over every rock in search of a life-saving organ. But they can not all be winners who receive an organ within the allocation system. The discrepancy between supply and demand is simply too great. (register now to donate) This system of distribution has been devised over years, by multi-disciplinary teams of highly knowledgeable stakeholders (including patients and families) through transparent and democratic processes (Organ Procurement and Transplantation Network Policies). It is imperfect but iterative. Improvements are made. When a gap is identified within this incredibly complex set of policies, a process is followed to fix it. When an unfairness is perceived, a similar process of debate is initiated. Action - or not - is taken. Unilateral decisions that effect multiple patients are not made by individuals, any of whom has an intrinsic bias of one sort or another.

A recent bypass of this set of checks and balances was created when a Federal judge temporarily ordered the Secretary of Health and Human Services to alter the allocation scheme for an individual patient's benefit (temporary restraining order).  This precedent has already generated legal action from at least one other patient seeking similar protection. One can only imagine the potential legal responses from the candidates who may be disadvantaged as a result of the relative advantage afforded to the original plaintiff/claimant. After all, this is a zero sum circumstance in which one patient's benefit comes only at another patient's loss.

Similar uninformed meddling in the transplant field on behalf of a patient came from a Mississipi judge who granted parole to one female prisoner with kidney failure on the condition that her similarly paroled sister donate a kidney to her. Unfortunately, neither had been accepted by a transplant program and both were declined because of obesity.

Legal intrusion into medical arenas as complex as the area of pre-transplant organ allocation +/or transplantation is not likely to facilitate better regulations, more transplants or a fairer system. The only actions that can effectively do so are successful efforts to diminish the organ shortage by individuals who register to donate and organizations that make broad efforts to support donation.

Caution is warranted to avoid generating chaos similar to a crowd surging to find a space on a lifeboat. While all involved are undoubtedly well intentioned, it may be most appropriate to consult knowledgeable persons in the transplant field prior to taking actions that may have far reaching consequences.

COMPELLING PATIENT WITH A POIGNANT STORY

The moving story describes a person desperately in need of an organ transplant(s) that may not happen in sufficient time to avert death. We learn that  (first name) (last name)  is ____ years old. He/she has failure of the (heart, intestine, kidneys, liver, lung, pancreas - circle all that apply) caused by ___________(fill in disease name).  He/she is a mother/father/daughter/son/sister/brother/husband/wife/other  (circle all that apply). When healthier, his/her time was spent in work/study/other for ____________. The primary reason that (first name) wants to be transplanted is to "_________________" (use patient's own words). Others want him/her to receive an organ(s) so that ________________.  He/she has been waiting on the list since (fill in month or year, whichever sounds more compelling) but is losing hope.

This bare boned, generic outline of a person dying from organ failure and hoping to benefit from a life saving organ transplant describes virtually all of the patients actually waiting for organs.

It may seem callous to distill a real person's desperate hope for transplantation into such a brief, apparently generic story as simple as the one that was sketched out above. Indeed, each of the >118,000 people waiting for organ transplants in the U.S. and thousands of others around the world does have a unique lifestory to tell that is truly heart wrenching when fully appreciated. Each is a real human being with a life partially lived but also partly unfulfilled. Each wishes to live longer. Some will. Some won't. When the details of that human being's life are stripped away from the relevant story outline leaving the virtually naked transplant candidate waiting in line without accoutrements, it becomes more feasible to assess the legitimacy of that person's claim to transplantation. But how to do that?

The only reasonable way to decide who will be winners is to have a transparent system of rules that applies to everyone and cannot be altered because one person's story is related in an especially compelling manner.
This system will necessarily seem harsh and unfair to the losers. It will probably also seem harsh but fair to the winners. And this system is administered by computer, not human beings.

It should not be forgotten that this is a "zero sum" situation. When one  patient with a poignant story wins, another deserving, compelling patient loses - and dies. Each is represented by a transplant team fully invested in their survival. They may even be listed at the same transplant center. In that case the same transplant team (real people with real feelings) deals with both the joy of caring for a surviving patient and the sorrow of caring for a non-survivor.

The only reasonable outcome is for every reader, for everyone who cares about one or more of these patients, and for every person who understands that some day they too may be telling their own story in the hope of being a winner, to work earnestly addressing the organ shortage. Register to be an organ and tissue donor now......tell your family.......and ask others to do the same.

RESPONSIBLE JOURNALISM WANTED: DEAD OR ALIVE - NOT BOTH

Determining that a human being has died is not an arbitrary process. It does not happen solely on the assessment(s) of untrained observers. And importantly, it does not necessarily follow the temporary absence of a beating heart. If it did, the majority of surviving heart bypass patients would be considered to have died and been resuscitated. Cessation of the heart beat (and motion of the heart) is necessary (for most patients) during that operation so that the vein graft can be safely sutured to the blocked coronary artery. The accurate interpretation of those events is that the heart has been arrested, blood has been circulated to the brain (and rest of the body) by the heart-lung bypass machine while the vein graft is delicately connected, the heart has been restarted (with an electric shock) and the patient has awoken following a standard procedure. The patient was alive throughout.

Journalists reporting about deaths or near-deaths must understand and adhere to these fundamental concepts to avoid misleading the public. Use of the terms "death" and "clinical death" must be reserved for specifically defined circumstances, not casually applied for dramatic effect. Unfortunately, in their zeal to report a recent heart-warming and highly emotive story, both FOXNews and CNN made errors that should not be expected from them. It appears that a pregnant woman suffered a sudden cardiac arrest, was supported with CPR by co-workers, had her heart restarted with a defibrillator, was taken to a hospital where an emergency C-section was performed, had a pacemaker inserted and is alive 3 months later. A wonderful story of skill and resuscitation. The problem is that both news agencies reported that the woman died and came back to life!  In contrast, it seems clear that she had never met the clinical definition of death - fortunately.

If highly reputable reporters cannot distinguish life from death - or do succumb to the temptation of sensationalist reporting without honoring an obligation for accuracy about use of those terms - how can we expect the average person to comprehend the end-of-life scenarios in which organ donation becomes possible? Such high profile stories seek and do grasp the public's attention, perhaps seeding subconscious beliefs about an inability to truly identify death or recognize a potential for resuscitation. Such subtle misleading messaging may be quite harmful to trust and to organ and tissue donation even if that was unintended.

Consistency (and integrity) in all communications about the definition of death is essential to promote the type of public trust in the medical system that will save lives when consent is granted for organ and tissue donation. Subliminal messaging evolved from publicized stories of miraculous recoveries from death, when death did not actually take place, is counter-productive and costs lives. If you come across other egregious examples of inaccurate reporting, please post a Comment on this blog. Shining the bright light of publicity on these unfortunate stories may help to reduce their frequency.

UPDATE: SIGNIFICANT CONGRESSIONAL PROGRESS ON IMMUNOSUPPRESSION CATCH-22

Progress in Congress is exciting. Slow progress is better than none. The awful immunosuppressive drug Catch-22 that limits Medicare coverage of the anti-rejection drugs for renal transplant recipients to (80%) for 36 months, jeopardizing both the kidneys and patients if they can't afford the medications and resulting in a return to expensive dialysis - which is again supported by Medicare, has been approached with new bi-partisan legislation in Congress. Since my blog post of March 7, 2013 the mate bill to Senate Bill S323, HR 1428 has been introduced by Representative Burgess (R-TX ) on April 9, 2013 and was sent to both the House Ways and Means Committee and the Health Sub-Committee of the House Energy and Commerce Committee.

Multiple new sponsors have "signed on" to each of the two bills currently sitting in their respective House and Senate committees. In congressional/political language this is highly significant progress.

New supporters of Senator Durbin's Senate Bill S323 include Udall (D-NM), Wicker (R-MS), Gillibrand (D-NY) and Whitehouse (D-RI). This brings the number of co-sponsors to 9, and the percentage of senators clearly supporting the bill to 10%.

HR 1428, the House version of the Comprehensive Immunosuppressive Drug Coverage Act for Kidney Transplant Patients Act of 2013 now has a total of 45 co-sponsors. Newest supporters include Johnson (R-OH), Latham (R-IA), Lofgren (D-CA), Posey (R-FL), Roby (R-AL), Tierney (D-MA), Schock (R-IL), Smith (D-WA), Levin (D-MI), Payne (D-NJ), Gosar (R-AZ), Lipinski (D-IL), Moore (D-WI), Braley (D-IA), Ellison (D-MI), Schwartz (D-PA), Bonner (R-AL), Connolly (D-VA), Hurt (R-VA), Lowey (D-NY), Courtney (D-CT), Pingree (D-ME), Owens (D-NY). Together with Burgess, the original sponsor, that makes 46/435, 11% of representatives clearly supporting the bill in the House.

As stakeholders and constituents who are eager to support this bill (to change the Catch-22 and save these kidneys and patients) our action steps are to make our voices heard. Phone calls and/or e-mails to our own politicians WILL be noticed if they come in sufficient numbers. Constituents' opinions do matter to politicians. Follow the steps outlined here to be heard. I can report e-mailing my own representative, Dan Maffei (D-NY) but receiving no response. To coordinate with the posting of this blog, I will reach out to him again. Let us know in the Comments section of this blog what your experience is!