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.

Face Transplant In A Sensitized Patient

FACE TRANSPLANT in a SENSITIZED PATIENT

Reading between the lines of the Feb. 27th Boston Globe article about the Brigham and Women's Hospital fifth transplant reveals an incredible accomplishment.  Not only was it yet another of a complex, still technically challenging transplants, but it helped a woman with a highly activated immune system that substantially raised the risk of rejection. We don't know exactly how far post-op the recipient, Carmen Blandin Tarleton, is. The date is not being publicized because it would allow determination of the donor's identity.

This type of discretion is highly appropriate and will help encourage additional donations. Continued sensitivity to the needs of the surviving families, and sharp focus on respect for the heroes, the donors, most of whom have remain publicly unidentified, is a crucial aspect of the field of organ donation. 


The extra concern about rejection is an addition to the factors that are becoming standardized with face transplantation - and how amazing that we can so quickly become accustomed to this incredible new quality of life transplant -  a mere eight years after the first one was performed in France by Dubernard and Devauchelle. Reports of this patient having received multiple prior blood transfusions explain why her immune system would have generated high levels of circulating antibodies primed to immediately recognize her new face as foreign (or not herself) and to attack and destroy it. Thousands of kidney failure patients seeking transplants confront the same problem with most never able to overcome it.


But the Brigham team was highly engaged and prepared to treat Tarleton's high antibody levels. She was treated pre-transplant with an experimental protocol. It sounds like she had a treatment called plasmapheresis which literally removes the antibodies from the blood, replacing that component of the blood with eithersaline,  albumin or plasma. Additionally she received an unidentified drug pre-transplant.

Of note, when she did have a post-transplant episode of rejection, she received another "special, expensive" drug that the hospital paid for. Such unique care is simply not available to kidney transplant candidates who might similarly benefit. In defense of hospitals, support of these expensive drugs (perhaps as much as $200,000 per patient per year) for a large number of patients would bankrupt the institutions.