Friday, May 31, 2013


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.

Monday, May 27, 2013


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!