All posts by Amy L. Friedman

Should This Kidney Txp Program Close?


Closure of the Miami Valley Hospital Kidney Transplant Program in Dayton, Ohio will alter the face of transplantation in the region – but will it be for the better or not? Whose opinion matters? This is a 43 year old program that has performed more than 900 kidney transplants according to the  Dayton Daily News , and patients have received deceased donor transplants faster there than at surrounding programs, or in the rest of the country. see program specific data reports To insiders, this may reflect better access to good quality organs, in which case the local patients would be disadvantaged with closure of the program. Or, it may mean that transplant surgeons were more aggressive in the types of organs they were willing to use for transplantation. If those organs worked well, the decisions were terrific. If not, then maybe not such good decision making. However, good outcomes also require good follow-up patient care, which takes a transplant “village”. And this may not have been readily available at a fairly small center.

Administration officials indicated that finances are driving the decision to close the program, a very plausible explanation since hospitals generate much more income from liver transplantation – not in this institution’s repertoire dayton daily news 3/19/13 . That is undoubtedly part, not all of the story. Local patients will now have to seek care at more remote transplant centers but will undoubtedly return to their own providers for follow-up. This is the trend in modern transplantation. Transplant at one center with the majority of subsequent care delivered elsewhere. It may be supervised to a greater or lesser degree by phone by coordinators from the primary transplant center. But a not so well known truth is that many patients will never return back to that transplant center, opting instead to receive what proves to be essentially the same quality follow-up care that may have been responsible at least in part for the closure of their own local center.

Which patients are least likely to return for follow-up at the primary center? The least healthcare literate, oldest and least affluent of course. So, closure of a small, local center favors the typical patients in subtle ways that also contribute to their better outcomes with transplantation. Go figure.

Is New Liver Support Device The Answer For Liver Transplant Candidates?

Two liver transplants performed in February 2013 at King’s College Hospital in England are remarkable because each human liver was temporarily supported ex vivo (outside of a human body) by a new support device liver device report . Both livers were kept alive with blood circulating (perfusing) through them at body temperature for the hours between being recovered from the deceased donor and subsequent transplantation into the waiting patients. Currently, a high proportion of organs available for transplantation are declined because of a high fat content (e.g., fatty liver) that literally congeals with the prevailing storage method in icy cold solution. Avoidance of cold with this new device might permit utilization of more of these available fatty livers – a major step towards saving lives.

Today we commonly utilize kidney perfusion devices that have been shown to improve the outcomes of transplants and to reduce the likelihood of transiently requiring dialysis after the transplant, until the organ recovers. In fact, the most commonly used device, the LifePort kidney support device has been on display at MOMA (the Museum of Modern Art) because it is so beautifully designed. With this and other devices, more kidneys of questionable quality are transplanted. We can both extend the time period between procurement and transplantation, and interpret measurements generated from the pump to determine the kidney’s viability. But an equivalent had not been available in liver transplantation.

The bottom line is that we have thus far become aware that the new liver support device from OrganOx appears not to have harmed the two transplant patients or their livers that functioned after being supported with it. The report is that both patients are making excellent progress. Whether or not the potentials for 1) prolongation of transplant time frames and 2) range of usable organs will be fulfilled as well remains to be seen.

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.

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

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.

Live Birth After 5 Organ Transplant

It’s a new record! Five years after receiving a 5-organ, multi-visceral transplant at the age of 19 years, a Qatari woman gave birth to a healthy daughter at the Jackson Memorial Hospital in Miami, reports AP Press. http://hosted.ap.org/dynamic/stories/U/US_ORGAN_TRANSPLANT_MOTHER?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT
There are so many successful pregnancies following organ transplants that there is a National Transplantation Pregnancy Registry. Technical issues that are routinely handled include adjustment of the doses of immunosuppressant medications because of the increased circulating blood volume during pregnancy, hypertension control, and close management of kidney function.

Details released about this case describe other medical miracles that are, today, simply taken for granted. The pregnancy was established through IVF (in vitro fertilization) and the baby delivered by Cesarean section. What a story! The first pregnancy after a 5-organ transplant including the liver, pancreas, stomach, small and large intestine. And now another new life. That’s what I’m talking about.

NJ Considers Pot + Txp, What Do You Think?

As marijuana use becomes more accepted throughout the U.S. the question of whether isolated cannabis use should prevent candidacy for transplantation is arising more frequently.  Clearly, anyone who behaves in a medical irresponsible manner for any reason – not showing up for appointments, skipping medications doses, etc. – will be turned down with or without the use of marijuana. But the individual who is fully compliant and acknowledges smoking pot (thereby being honest with providers!) has often been excluded. The issue is more complicated by the fact that the medical use of marijuana is legally permissible in an increasing number of states.

New Jersey Senators have just passed S-1220 to specifically prevent medical marijuana users from being ejected from transplant wait lists. http://thinkprogress.org/health/2013/03/07/1685791/new-jersey-medical-marijuana-transplant/?mobile=wt  Transplant centers require such support from society to be able to effectively apply such directives. Why? Because it is the insurance carriers whose policies drive decisions behind the scenes. Even if a transplant team supports the marijuana smoking patient’s candidacy, if the insurance company cannot be persuaded, unfortunately the patient won’t be transplanted.

In the absence of clear evidence that marijuana use specifically harms organs transplants or interferes with the immunosuppressive drugs, this issue is likely to become a more frequent challenge. While cessation of cannabis use is to be encouraged in order to avoid any additional inhalant into lungs vulnerable to infection, it should not be required in the otherwise compliant patient. However, it should also be noted that anyone with sufficient financial means to purchase marijuana must also be able to afford all medications!

Congress ACTING On Transplant Catch-22

Though it seems incredible, Medicare coverage for the anti-rejection drugs for kidney transplant recipients currently stops 36 months following the transplant. For those patients unable to afford these immunosuppressive medications (that cost between $10,000 and $20,000 yearly) a crisis may lead to rejection and loss of the kidney. With recurrence of kidney failure and resumption of dialysis, Medicare kicks in again – at a much higher cost of roughly $70,000 per year.  What a ridiculous catch-22!

I had the privilege of leading the American Society of Transplant Surgeon’s (ASTS) Legislative Committee for 3 years and am thrilled to report that after years of collective efforts on the parts of ASTS and other collaborating organizations, Congress is taking steps to fix this problem. The Comprehensive Immunosuppressive Drug Coverage Act of 2013 was introduced by U.S. Senators Dick Durbin (D-Ill.) and Thad Cochran (R-Miss.) on Feb. 13 and was referred to the Senate Finance Committee. http://www.govtrack.us/congress/bills/113/s323.  Nephrology News & Issues reports that a House version of the bill is expected to be introduced in the next few weeks. http://www.nephrologynews.com/articles/109339-bill-introduced-to-extend-coverage-of-transplant-drugs.

Nephrology News & Issues also reports that Senators Inouye (D-Hawaii), Schumer (D-NY), Levin (D-Mich) and Cardin (D-Md) have signed on as co-sponsors.  If your Senator s) have not yet signed on, why not take a moment to call their office or e-mail them to express support for this important bill. One of the key things I learned about the legislative process is that politicians DO listen to their constituents, particularly when large numbers express the same opinion. Follow the bill’s process at the government website (see above) – be informed and speak up to improve the system.

C’mon – Another Reporting Error About Life Support

In a March 1st report in the Las Vegas Sun about the tragic death of a 7-yr old beaten to death by his mother and stepfather in Las Vegas http://www.lasvegassun.com/news/2013/mar/01/pathologist-says-beating-victim-7-had-53-areas-bod/, error # 2 and error #3 (see March 3, 2013 www.transplantexpert.blogspot.com) were both committed. Although the report indicates that the boy was declared brain dead on Nov. 30, 2012, elsewhere it indicates that he was removed from(error # 2), and died Dec. 3 (error #3) after being removed from “life support” (error #2).

To be clear, he died on Nov. 30, when he was declared brain dead. Once declared brain dead, he was kept on artificial support, (as his life could not be sustained).

Although these details may seem minor, they are not because the terminology is indeed quite confusing. Without a consistent message that brain death = death of the human being whose life has ended (and therefore can no longer be supported), it is difficult to expect full, sub-conscious acceptance of this concept. The time for responsible use of very specifically defined terminology has come. The time to hold our journalists to task has also come.

Journalistic Accuracy Needed

There is work to do. Improved journalistic consistency and responsibility in reporting about brain death is needed. With this post I hope to start a GrassRoots movement to encourage greater attention to detail from journalists. Without their help, broader community acceptance of the concept of Brain Death as death of the human being may not reach the rates we need to facilitate organ donation.  Let me explain.

The state of Brain Death is strictly defined and is a legal definition of death of the human being because the brain itself has died. This is not reversible. However, many cells elsewhere in the body are often alive and kept functional by the oxygen that is circulated to them by the patient’s beating heart and artificial respiration, (also called artificial support or ventilatory support). It is these cells residing within organs that, when treated appropriately, may support lives once transplanted into other persons. Without artificial support the rest of these cells would also die fairly rapidly too. For this reason, brain death is really a man made state. Without machinery, the person would still be dead (because the brain is dead) and the rest of the organs would rapidly stop functioning too.

So, what needs to be changed?

  1. If brain death has been declared, death does not subsequently occur. It occurred at the time of declaration of brain death. Typically, the certificate of death is completed with that time of death.
  2. If brain death has been declared, the person cannot be kept “alive” on “life support”. 
  3. If brain death has been declared, the person does not die after removal of artificial support. If that was the case, removal of such support would be a criminal act.

On February 26, 2013, Joe Nocera blogged in the NY Times that a 16-yr-old girl was both brain-dead and “being kept on life support so that her organs may be donated”, http://nocera.blogs.nytimes.com/2013/02/26/the-gun-report-february-26-2013/. The original source was ABC-7 News in Fort Myers, FL, http://www.abc-7.com/story/21318272/woman-injured-in-ale-house-shooting. In that story the third problem was illustrated, “She was later taken off life support and died”.

With this post, a call to draw attention through this blog to all similar errors of accuracy that are found in print or other media. I will start tabulating the errors by sources. The intent is not to embarrass, but to encourage change. Please share this blog post with your friends and family. Your participation will make the difference!