Saturday, March 16, 2013

Asking FOXNews + Dr. Marc Siegel.......

Dear Dr. Marc Siegel,

Your current report on the tragic case of rabies transmission is right on target except for the use of 2 words. Marc Siegel's FOXNews report In 2004 donor families formally requested a change of transplant related terminology from the transplantation community in order to honor their loved ones. The editors of the major transplant journals and other leaders in this field have all collaborated to create this appropriate change. Today, we no longer use the term CADAVER, saying DECEASED DONOR. And we do not use the term HARVEST, instead using PROCURE or RECOVER.

Though not included in this report, we also avoid using any term including the word "life" (such as life support) to a person already declared brain dead, opting instead for mechanical or artificial support.

Please accept this respectful request to update the terminology that you and FOXNews use in referring to organ donors and transplantation as an opportunity to increase your sensitivity to the generosity of the the real heroes and their families. It is easy enough to do and will be deeply meaningful.

Amy L. Friedman M.D., F.A.C.S.

Friday, March 15, 2013

Perspective: Why Does One Rabies Death Matter So Much?

Though truly tragic, this morning's news that one kidney transplant recipient in Maryland contracted rabies and died in 2012 through the process of deceased organ donation in 2011, (CNN report of rabies death) must be kept in perspective. There can be no doubt that all parties involved intended to help save lives through organ donation - and that these organs were desperately needed. Indeed, tonight, there are 117,477 people on the U.S. waitlist for all organs. And each DAY in the U.S. 18 people whose lives might have been saved through organ donation die.

But transmission of unusual and unexpected infectious organisms like Rabies and Balamuthia (an amoeba known to cause encephalitis) has been previously reported through organ transplantation. The question to be asked in each case of potential organ donation and transplantation is which is greater, the risk of doing the transplant or the risk of NOT doing it. Surely, many of the people who have died awaiting transplants would have been eager to take such chances had they known they might still be alive > 1 year afterwards as 3 of these 4 "rabies tainted organ" recipients (1 kidney, 1 heart, 1 liver patient) apparently still are. These patients are alive and reported to have begun receiving anti-rabies therapy. We will learn together whether they survive - and we all certainly hope they will (I feel confident in speaking for us all).

So, keep in mind that our crucial task is to address the organ shortage, not to judge anyone involved in the 2011 donation and transplant that led to the unfortunate death on one person from rabies. While we grieve that loss, let's be constructive, remember the big picture, use the death to motivate new memberships in organ donor registries organ donor registration and to urge journalists to be more responsible in their overall reporting about brain death brain death journalistic inaccuracies .

Rabies Bites A Transplant Recipient!

News has just been released by the CDC (Centers for Disease Control and Prevention) CDC rabies story of the third known episode of human to human rabies transmission through organ transplantation. Thankfully this is extremely rare, though lethal. All that has been shared thus far is that one of 4 organ recipients from the same organ donor in 2011, died more than one year later of the same raccoon type of rabies as the donor. To be clear, the donor was NOT known to have rabies at the time of death - this is the essence of the problem.

A key principle in deceased organ donation is that the cause of death must be known - in order to prevent exactly this type of disease transmission. If there was a rapid test for rabies that could be applied, then we could exclude it. But there is not, so we must rely on having another cause of death. In the first episode of transmission in 2004, cerebral hemorrhage in the donor was a plausible cause of death and the simultaneous presence of rabies was a complete surprise. The devastating result was the death of all 3 recipients from transmitted rabies.

With today's news we have also learned that 3 of 4 recipients remain alive and are being treated aggressively with immunoglobulin (passive therapy) and anti-rabies vaccination (active therapy). Let us all hope that they survive this tragedy. We accept the cryptic nature of the information being released - clearly the patients and donor are all entitled to privacy. We await more information so that we may sharpen our questions and choices with respect to acceptance of potential organ donors. But please remember that the severity of the current organ shortage that is associated with the deaths of 16-18 persons per day in the U.S. makes it very difficult for us to turn down donors who seem to be appropriate. What we must be certain to do is to appropriately educate and involve potential recipients about known risks such that their choice may also be informed.