CITIZEN ACTION NEEDED TO HELP KIDNEY PATIENTS – AGAIN

U.S. kidney transplant patients are caught in a political/fiscal Catch-22 that leads to cessation of Medicare coverage for their anti-rejection medications at approximately $10,000 to 20,000 per year, 36 months after transplantation. A proven outcome for some patients has been failure of the transplant with a return to expensive dialysis – again paid for by Medicare, this time at an approximate cost of $70,000 per year. Ridiculous, right?

http://www.govtrack.us/congress/bills/113/hr1428#

Ironically, this dilemma fits well into the mutual history of kidney disease and Medicare. We now take Medicare coverage of dialysis for granted. But it was an individual citizen’s definitive and courageous act that helped establish that new entitlement forty years ago. Shep Glazer, a 43 year old husband, father and salesman, supported by the precursor organization to today’s American Association of Kidney Patients,  and other stakeholders, opted to be openly dialyzed on the floor of the Ways and Means Committee, stunning everyone on November 4, 1972.  His “excellent testimony” made the point. Chronic kidney failure was adopted into the Medicare program in October 1972.

It appears that Congress may now finally be committed to fixing this medication coverage problem.  Another step has just been taken on the legislative pathway, but a few major ones are still required (make it out of House and Senate Committees, approval by House, approval by Senate, negotiation + agreement by House + Senate members, Presidential signature). Kudos to Representative Michael Burgess from Texas who introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013  
into the House of Representatives on April 9, 2013. The House Bill was referred directly to the House Ways and Means Committee on the same day and matches the Senate Bill previously introduced on February 13, 2013 by Senators Durbin and Cochran. Both would remove the medication coverage cliff awaiting patients at 36 months following kidney transplantation.

Noted clearly on the government website is the low percentage of bills that make it out of Committees for consideration by the entire House or Senate; only 13% of House bills and 1% of Senate bills succeed to the next procedural step. If our dual immunosuppressive bills don’t make it out of their respective committees, they will be “dead” and the Catch-22 will continue. This is where your help is needed – really. We must help push these bills out of committee for consideration by the entire legislative bodies.

Politicians respond to their constituents, especially when significant numbers of citizens make the effort to respectfully express an opinion through the system. To date, it appears that only 35/435 Representatives have signed on as co-sponsors of the Burgess bill, and 5/100 Senators have signed on as co-sponsors of the Durbin bill. Many of our legislators need to hear directly from us about these bills.

Spend some time now confirming the identity and contact information for your own Senators and Representative.   If your politician has already “signed on” to the appropriate bill (the Senate bill for a Senator, the House bill for a Representative), call or e-mail to say; “Thank- you for signing on to the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013”.  If the individual has NOT YET signed on, indicate that you believe that signing on is important – and why.

Special effort should come from constituents who live in the districts and states of the House Ways and Means and Senate Finance Committee members. They include:

You will be joining an important and proud tradition of citizen voices shaping Congressional action. Shep Glazer’s personal action was considered “excellent testimony” and made a real difference. Your personal phone calls and e-mails will be too.

< SIX DEGREES OF TRANSPLANT

Organ donation and transplantation have steadily become so intertwined with the cultures of the developed world that it is difficult NOT to find connections to our own lives. Just this weekend while spending time away with family, I personally fell upon two different and poignant true life transplant tales.

In the first, the woman arranging the new lease on my daughter’s (a college freshman) first apartment was unusually helpful – almost motherly in her patient approach. We had established an easy working relationship on the prior day when I scouted the building ahead of my daughter. Despite being kind, her thoroughness and professionalism had provided me with confidence and reassurance that my daughter would be in a well run facility. I was therefore stunned when her placid face and smooth toned voice changed suddenly as she looked at my responses to the form on which I promised to back up my daughter’s credit. The words she spoke made no sense; “I pray for you every day”, she said.  I did not understand the sudden appearance of tears either. But then she asked; “Are you really a transplant surgeon?” and her story spilled out.

I had been right in my assessment of her maternal nature. Her own daughter was a transplant recipient, having received her father’s kidney 30 years ago at the age of 8. The family had traveled to the U.S. seeking the transplant that was unavailable at home. Tragically, the donor/father/husband was murdered by terrorists back at home a few years later. Subsequent successful life led to the young transplant recipient’s natural desire for procreation which carried risk for the potential mother and her kidney. So, the woman/leasing agent became a surrogate mother for her own grandchild, to protect their daughter and the transplant. Years later the kidney still functions well, the daughter works full time as a professional and is the mother of a successful young person. Now I believed this woman’s description of her daily prayer for all transplant surgeons.

Secretly hoping that my daughter was as moved by this woman as I was, I returned to find my young niece back at home. Again amazed, I listened while she recounted the adventures of a classmate who had recently missed many weeks of school because of a live donor kidney transplant. Now she was happy that he was back most of the time, except for doctor’s visits. He was even well enough to join her in physical education activities approximately 50% of the class time!

Either I have the same type of powerful, natural attractant for people connected to transplantation + donation that I do for mosquitoes, or these fields of medicine/translational science have had enormous impact on society. The facts clearly support this success. Just in kidney transplantation, recent data show growth to an incredible number of prevalent (currently alive with a functioning transplant) patients just in the U.S. of 179,000 patients in 2010. (By the way, note that only 15,000 recipients were alive in the era of the leasing agent daughter’s transplant – a rare and marvelous success story stoked by the support of her mother/gestational carrier.) There is no simple means of equivalent, accurate tracking for patients with other types of transplants.

My own experience in speaking to audiences about these topics is that roughly 25% will raise hands to indicate that they have personal contact with these worlds. Still more subjective confirmation that it would take less than 6 degrees to connect most of us to transplant. Would that just as many people will join organ registries, especially during this April – Donate Life month. I WILL love to fall upon and recount even more dramatic – and true – stories yet to come.

I am currently grateful to the leasing agent for permitting me to share her story with you.

Transplants Bridge Divides

A 16 year old Pakistani girl received an urgent live donor liver transplant in India two months ago. Previously an Israeli suicide bombing victim donated a kidney to a Palestinian woman. Conversely, a Palestinian man’s heart now circulates the blood through an Israeli man’s body. All of these cases illustrate how organ transplantation can move individuals and their surrounding peoples to bridge epic political divides so that the right thing happens. Tragedy morphs into triumph.

Such beautiful selflessness is sometimes seen even within families suffering the serious pain of separation. When Richard Leakey, the renowned paleoanthropologist and conservationist needed a kidney transplant in 1979, his brother Philip donated an organ that then functioned for 26 years. Philip interrupted his own political campaign for the Kenyan parliament to undergo the procedure, indicating that, “There is a strong family bond” according to People magazine. Less emphasized than that act of heroism (every live donor is a true hero) was the fact that the two brothers barely spoke during 20 years despite the transplant, according to the Philadelphia Inquirer in 1995.

Behind closed doors, those of us privileged to work in this field often participate in similar stories in which an act of live or deceased organ donation and the subsequent transplant accomplish a connection that had seemed virtually unimaginable or reestablish a bond that had seemed unbreakable. These moments are spectacular even for we crusty old healthcare veterans – good exposed beneath tough outer human shells. Neither contrived nor fictitious, the moments are glorious.

Every plain vanilla case of donation and transplantation is glorious too. When reduced to the smallest scale, every live donor has accepted personal risk to save the life of another, regardless of who the donor is. Any deceased donor’s organs and/or tissues have been gifted to save or better the lives of others, without qualification by demographics. Each recipient has gained a priceless opportunity to remodel or extend life without entitlement, no matter where the organ originated.

Failure to appreciate the magnificence of what is indeed now taken for granted is a mistake. If it takes “bridging” transplants to help  refocus on the amazing altruistic potential  that does lie inside us all, then more of these stories must be told. Perhaps some who would not otherwise have done so will be moved to register to become organ donors. After all, if Palestinians and Israelis, Pakistanis and Indians can help each other, can’t we all do so? And again, let us not overshadow the everyday tales of donation and transplantation that are equally compelling if perhaps somewhat less dramatic.

Now the US Will Use Prisoners’ Organs Too!

News stories of “donated” organs from executed Chinese prisoners being transplanted have horrified the transplant community because of concern about the lack of donor consent and other corollary ethical issues. Now comes news from the first of our fifty states to have torn down legal obstacles to the same practice. On March 28th, Utah’s governor Gary Herbert signed legislation, H.B. 26, that expressly permits prisoners to make anatomical gifts if the inmate dies while in the custody of the Department of Corrections. Death row inmates are not excluded. With passage of the bill, the names of 247 inmates who expectantly signed organ donation documents have been added to the state donor registry according to JoNel Aleccia, writing for NBC news.

Pro arguments for the use of prisoners’ organs include the desperate need for more organs to stem 18 deaths per day on the U.S. wait list for transplants. And why should commitment of a crime serious enough to land a person in jail necessarily imply an inability to give informed consent for organ (and tissue) donation? Should inmates really be denied the right to make one or more altruistic acts upon their death? Is the notion of reforming a human’s ability to behave honorably a complete lost cause?

Con arguments abound as well. Today, we would consider any prisoners’ organs to fall within the definition of “CDC high risk” because of the increased prevalence of HIV infection. Would a jury and judge feel more at ease sentencing a defendant to death knowing that organ donation was already checked off on the driver’s license?

Reality can be unpleasant

Without absolute answers to any of these questions, a practical issue arises. Once an organ recovered from a Utah prisoner organ enters the national UNOS system, it will be allocated to a patient somewhere in the U.S. That patient may be located outside of the state of Utah. Similarly, tissue may be distributed throughout Utah, Idaho, Wyoming or Nevada, according to the Intermountain Donor Services 2012 Annual Report. The anonymity that is intrinsic to both organ and tissue donation systems assures that recipients will not be informed that their anatomic gifts were donated by a prisoner, regardless of their state of residence. Thus, passage of the Utah law implies that the entire U.S.  is now engaged in the practice of using organs from prisoners.

Reality can be unpleasant. The organ shortage is terrible. Commission of a crime serious enough to land a person in prison merits serious punishment. So long as transparency is retained within a system that requires informed consent of donors and recipients, this new law may be an important step forward for inmates and transplant candidates. Utah has dragged the entire U.S. into an ethically challenging arena. The implications must be clarified and openly acknowledged. Alternatives are not readily apparent, especially to those who can expect to die waiting for organs not otherwise available.

Every Transplant Surgeon’s Learning Curve

Who should be selected to perform a transplant, a surgeon who has performed 100 prior transplants or one with the experience of 500 previous cases? Most of us would indicate that the more experienced surgeon is the obvious choice. We are intrinsically responding to the desire to have a surgeon who has moved farther along or completed his/her learning curve for that transplant. Noone wants to participate in the early portion of a surgeon’s learning curve, do they?

Although that is a logical response, it is also unrealistic. Every surgeon – every single surgeon – has had a personal learning curve. The surgeon should still have active mini-curves for new devices and new procedures that are relevant to his/her practice. No surgeon has been pre-loaded with any of the knowledge, skills or judgement that comprise surgical experience. And, how are new surgeons going to be trained, or experienced surgeons going to learn new procedures (think of when the laparoscopic donor nephrectomy was first introduced) without passing through a respective learning curve. The answer is that they won’t.

Patients are protected during learning curves through the collective efforts of transplant teams which mitigate (disperse) most of the risks. This is a specialty that still preserves the old fashioned concept of surgical training as a type of apprenticeship. Trainees are guided and supervised day in and day out by the same mentors who come to know them very, very well. These mentors know their strengths and weaknesses and specifically help to hone their skills both in and out of the operating room. Independent responsibility is permitted on a graded basis and is earned based on performance. The senior mentor is physically present, assisting the learning surgeon but also prepared to assume control if necessary – similar to the 2 pilots in a cockpit. This is the system that protects patients. And, it is a major part of why a transplant team is judged on its collective performance, rather than on the individual providers’ outcomes.

Notable too is the challenge of determining when the highly experienced but aging surgeon should stop – or be stopped – from personally performing surgery. This sensitive issue is also mitigated through the team approach, allowing valuable experience to still be put to genuine use.

If it is unreasonable to expect that only the most accomplished and senior (but not too senior) transplant surgeon will be operating, what are reasonable expectations? The identities and backgrounds of those surgeons who participate on the team should be made accessible.  But, presence of a specific transplant surgeon at a transplant center does not translate into accessibility for a specific procedure unless it is a live donor transplant. Deceased donor transplants simply are not scheduled in advance. Consequently, the team’s on call structure is very important and determines which surgeon(s) will participate. This reality should be clarified at the time of pre-transplant education. The patient should be able to expect to have a surgeon who has progressed far along a relevant learning curve(s) participate in the impending transplant and should feel empowered to ask directly whether or not this is the case.

Comments from patients and other stakeholders on this post are welcome – please participate in the Comment space below.

 

Depression Treatment Linked to Longer Transplant Survival

An elusive goal, the ability to favorably impact LONG TERM survival following liver transplantation has just been reported for the first time from the University of Pittsburgh in the American Journal of Transplantation. Earlier posts have focused on the emergence of a new Quality of Life Era of transplantation because of our ability to predictably overcome routine EARLY surgical and immunological challenges.  Rogal and collaborators now show that adequate depression treatment with medication(s) within the first year after liver transplantation for alcohol related disease is more strongly linked to the patient’s survival at ten years than other risk factors. More strongly linked to survival at ten years than how ill the patient was at the time of transplant. More strongly linked to survival at ten years than the absence or presence of Hepatitis C.

Why is this so significant? Because it represents a factor that we may potentially improve to improve survival! The overall ten year survival rate following liver transplantation with a deceased donor organ is only 54%, far from what we would like it to be. Judging (extrapolating) from the 25% of patients in this study who were depressed but inadequately treated, the ability to intervene more favorably in one-quarter of transplant recipients could significantly impact the overall statistic. And forgetting about statistics for a moment, wouldn’t it be wonderful to offer better therapy to each of those inadequately treated patients?

The question is how to accomplish the delivery of adequate care of a complex patient within the current healthcare environment? Transplant teams don’t routinely deliver primary care for their patients and depend on local providers to do so. While psycho-social personnel are key team members, they usually focus most on the pre-transplant and early post-transplant issues. These new important data highlight a possible need to expand that emphasis or, at least, to improve the linkage and tracking of what is happening locally – consistent with the Accountable Care Organization model. Not easy to accomplish particularly without additional resources. Clearly, we will have to find a way.

If, as I suspect, the finding that the adequacy of depression treatment also extends to a strong linkage with long term survival following kidney and other transplant types, monitoring of the mental health medications and (perhaps) services will also require improved engagement by those respective transplant teams. Wow, a lot to chew on. But, at least we have a direction in which to go so that we can potentially make outcomes better.

ABC Drama Risks Harming Tissue Donation – For Real

Yes, organ and tissue donation are exciting, medically provocative and timely – what more can a Hollywood writer ask for? Perhaps that is why the April 2nd episode of ABC’s Body of Proof tore the topic of rabies transmission through transplantation directly from the headlines. Less than three weeks following the first public report of the second U.S. case transmitted through solid organ transplantation and weeks after the season premier of the show, writer Alexi Hawley’s hastily written script might well have benefited from better editing and consideration of responsibility to the public.Sure rabies transmission can – and has – occurred through tissue transplantation. But creation of a plot based on  people vanishing from their lives to become victims of a serial tissue “harvester” and the pervasive use of callous, insensitive terminology such as the “dead body” were simply uncalled for.

How can any uninformed layperson who saw this episode’s fileted open extremities within the context of a serial murder body snatcher seeking to “harvest tissue” ever be expected to respond favorably to a real opportunity to donate tissues +/or organs? Repeated references to the “dead body” and the “cadaver” only deepened the portrayal of lack of respect for the human beings at the center of the story.

It is time for Hollywood and the entire entertainment industry to harness the power they control to consistently deliver truthful messages about transplantation and donation. Yes, stories such as rabies transmission make for easy fodder. Retelling them in responsible ways will not limit the drama. It will require a bit more energy on the parts of writers and producers. It is well worth the effort, as one never knows who will be waiting next in line to be a recipient of this good will.