Living Donors Are People Too

Transplant Industry Conflict of Interest plus State of US Kidney Donors

2012-01-26T14:49:00.003-05:00

Meeting notes from last August's ACOT meeting are now available online here. Near the very end, Attachment B, is a public comment submitted by Jane Zill, LICSW.

Yeah, she's been mentioned here before.

Here's the direct link to her statement, if you don't want to rifle through the meeting notes.

It probably goes without saying that I agree with Ms. Zill. There is a terrible conflict of interest in the transplant industry regarding the protection and care of living donors. She's also correct in saying that the living donor experience has been defined by the very people who stand to benefit from their sacrifice. The industry, in fact, has controlled the entire message regarding living kidney and liver donation since the beginning.

[Note: Some of us are trying to change this. Please fill out the survey if you want to contribute]

Remarkably, I somehow missed sharing Cooper and Davis' article with you, the one referenced by Ms. Zill, so I thought I'd do so now.

- 49.5% of kidney transplants between 2000-2008 were from living donors.

- The Medically Complex donor is defined as the presence of hypertension, obesity, or an estimated GFR < 60. From 2000-2008, 12.8% of this cohort were obese, 10.3% were hypertensive, and 4.2% had low eGFR. Donor characteristics that were associated with medical complexity included spousal relationship to the recipient, low education, older age, and non-U.S. citizenship.

- As of 2008, 60.6% of living donors were female.

- Median age of 41, up from 35 in 1988.

- 19.5% of living donors had a BMI>30 in 2008 as compared to 14.4% in 2000.

- 22.4% of new living kidney donors in the United States have some form of medical abnormality or condition that puts them squarely at risk for developing cardiovascular or renal disease. <- Think any of those prospective kidney donors were informed of this risk factor prior to donation?

And my favorite:

When 25% of some data fields are missing data, this clearly impacts the level of conclusions that may be made using the [OPTN] database.

Ya think?

Davis, C., & Cooper, M. (2010). The State of U.S. Living Kidney Donors Clinical Journal of the American Society of Nephrology, 5 (10), 1873-1880 DOI: 10.2215/CJN.01510210

Readers Corner: Sybil Exposed by Debbie Nathan

2012-01-19T14:29:00.000-05:00

Sybil, published in the early/mid 1970s introduced society to the concept of multiple personality disorder, as well as the long-term ramifications of childhood abuse. The book was an overwhelming sensation, spawning a mini-series and a new therapeutic specialty. Problem is, according to author Debbie Nathan, the whole thing was pretty much a fraud.

For certain people, Sybil's story resonates so strongly that no amount of 'facts' or 'truth' will sway their opinion. These people have taken to attacking Ms. Nathan: as unqualified (as if Flora Schreiber was any more of an expert when she wrote 'Sybil'), for knowingly perpetrating errors, for judging Dr. Willis for using (at the time) acceptable treatment techniques, or for writing with an obvious agenda (again, as if Schreiber and were neutral on the topic). The only proof this book's detractors seem to produce is "Sybil" itself, which was never fact-checked by the publisher (as the subsequent lawsuits illustrate), or an assertion of having DID/MPD (I have it, so it must be true!) ,or an alleged relationship with Shirley Mason (aka Sybil), which is quite convenient considering Ms. Mason can't confirm or deny due to her pre-existing condition as dead.

The medical profession has a spotty history where women are concerned, and the advent of MPD (now known as Dissociative Personality Disorder) is no different. As we now know, boys and young men are not exempt from molestation and abuse, yet MPD/DID (as well as hysteria, and borderline personality disorder) are primarily women-only diagnoses. It is not unreasonable to question the origins and purposes of such labels, and such queries do not necessarily render the entire paradigm erroneous or moot. In other words, "Sybil" as fabrication does not negate DID/MPD as a real disorder.

Yes, Dr. Willis was a practitioner of her time, but paying Shirley's rent, taking her on trips, allowing her to sleep over - those things were as unethical in the 1950s as they are now. She allowed Shirley to develop an unhealthy dependence on her, and despite evidence of falsehood and suggestibility, she continued administering barbituates and other 'truth' serums. Willis was a psychiatrist - a physician - she knew what drug addiction looked like, yet she watched Shirley's function deteriorate and never questioned the role of the medications?

One undisputable fact is that Willis sold out her patient for the sake of Shreiber's book. No ethical practitioner would ever have suggested she participate in such a thing, and no responsible journalist ever would've exposed a woman as fragile as Shirley Mason to the public in such a way. Yet they both did, and they profited greatly from it. Meanwhile, Shirley was hounded, lost her job, her house and her hard-fought independence and contentment in the world. And when the pressure mounted, Willis told her to cut all ties with her loved ones, which she did without explanation, much to their hurt and confusion.

In truth, I think it was unnecessary for Ms. Nathan to lump in the story of "Sybil" with 21st century attitudes toward DID and/or memories of childhood abuse. Yes, mistakes were made in the 1980s and 90s, but I'd like to think we've all learned quite a lot since then (and by 'we', I mean mental health practitioners, law enforcement, and the public). Nathan's prior coverage of false memories clearly establish her opinions on the matter, and frankly, hurt her journalistic integrity in regards to "Sybil's" veracity. It is the one weak point of her argument, and the one her detractors have successfully seized upon.

In closing, "Sybil: Exposed" is an worthwhile examination of mid-century gender struggles, evolving definitions and treatment of mental illness, and the power of narrative to affect change. Ignore the zealots and read it with those things in mind.

Kindle version:

Nurse Giving Kidney to a Patient is Nothing to Celebrate

2012-01-16T18:33:00.001-05:00

From the LA Times:

http://www.latimes.com/health/boostershots/la-heb-kidney-donation-nurse-20120116,0,95491.story

Taber eventually would up in the transplant unit at Emory, where Batson, a transplant nurse, was working.

Batson continued to visit with Taber, and by the time he was discharged to continue dialysis treatments at home, Batson offered him her kidney if it was a match, since she had the same O-negative blood type.

Why is this a problem?

Because a nurse's duty is to give the same, high quality care to all of her/his patients. Imagine if you were one of Ms. Batson's dialysis patients and you found out she gave one of her kidneys to Taber. Wouldn't some part of you resent that she didn't give it you? Wouldn't you doubt the level of care you were receiving from your medical providers? Undoubtedly.

And this is the exact reason why people in helping professions (doctor, nurse, clergy, social worker, therapist, lawyer, teacher, etc) are schooled on things like 'boundaries' and 'ethics'. These guidelines prohibit behaviors that aren't illegal per se, like engaging in romantic/sexual relationships with clients/patients, giving money to patients/clients, or even providing treatment to relatives or loved ones, but are detrimental or threatening to the professional dynamic. The point is to keep the professional's focus on the job at hand, and to avoid preferential or discriminating behavior.

I think we can all agree that kicking out a kidney is the ultimate in favoritism.

What's worse than Ms. Batson's lapse is that a host of specialists, surgeons, social workers, nurses, and coordinators were complicit in it. Not a single one of them stood up and said, "Hey don't you think this is setting a bad precedent?" No, the belief that a recipient should obtain a living donor transplant is so pervasive that everyone at Emory threw their ethics out the window.

And that's a bad thing for everyone, especially their living donors.

See Also: Loyola's Living Donor Ethics - Beyond Epic Fail

Update on the Scott Sisters from Mississippi

2012-01-13T08:57:00.001-05:00

Remember them? Gov Haley Barbour released them on parole with the condition that one give a kidney to the other. While I was peeved he would be such an ass, I was more enraged that no one in the transplant industry (OPTN, UNOS, ACOT, ASTS, the rest of the alphabet soup) said a word in opposition, even though a thing is ILLEGAL.

So Barbour's made the news again with his 'pardons', which the Mississippi court has temporarily halted.

Naturally, someone had to check in with the Scott Sisters:

Sisters Freed from Prison for Kidney Donation Disappointed Governor Didn't Pardon Them

Some Living Donor Love From a Doctor With Kidney Disease

2012-01-12T12:08:00.000-05:00

First Do no Harm: The Living Renal Donor Dilemma - Dr. Brenda Mayne's Story.

There's so much I could say about all of this, but it's probably easier to just point everyone over to Living Donor 101, or refer to the blog archives instead.

Cases like Brenda's are why I repeatedly (and annoyingly) urge prospective living donors to EDUCATE THEMSELVES before undergoing the procedure. Asking questions of the doctors, coordinators, nurses, etc at the transplant center simply isn't enough. It should be, but it isn't. The belief that living donation is the best treatment for the recipient, coupled with the idea that living donation is safe for the donor is so pervasive and strong that the transplant industry is seemingly unable to entertain anything to the contrary. Even the author of the above blog, diagnosed with end-stage renal disease, was never told that home dialysis produces the same quality results as transplant. Considering his history of cancer, this information should've spilled forth from the nephrologist early in the author's treatment. Yet he was steered toward a transplant instead.

It is imperative we serve as our own fanged advocate, before and after the donation. No medical professional cares more about our health than we do. No one else has to live with the repercussions either.

PS. Thanks Dr. Laird for the link.

Should Publicly Funded Research Be Available to the Public For Free?

2012-01-11T12:11:00.000-05:00

This may come as a shock to many, but a significant amount of research conducted and subsequently published is funded by (gasp) - the federal government.

That's right, what the free market idiots don't want you to know that is that the private sector isn't interested in theories and hypothesis and "what if's" and "could we do this better?"; they're only interested in short-term profit. If you don't believe me, refer to this article, and this one, and even this one about Big Pharm's marketing budget, R&D budget, and oh yeah, profits and executive compensation.

The feds, meanwhile, hold the perspective the some things are more important than profit, that knowledge and information for future use is valuable.

Some examples: nuclear energy (yeah, the bomb thing is questionable), the entirety of NASA, disease progression and transmission (smallpox, syphillis), the internet (!) ....

Here's what the National Institute of Health (NIH) funded just last year: less invasive breast cancer treatment, early HIV treatment prevents transmission, less medication for wheezing preschoolers, insulin nasal spray shows promise for alzheimer's, etc etc.

Currently, this publicly funded research must be accessible to the public for free. Makes sense, right? We, the taxpayers foot the bill, so we get to see the end product.

Apparently not everyone agrees, or so says "The Research Works Act" floating its way through the House. Sadly, but not surprisingly, this bill is sponsored by the publishers of academic journals, who charge $15 or $30 or more for access to ONE article in their periodical.

"We need to protect our brand," They whine, "Well, and our profit margin too."

Except that their subscription fees ($170 per year for the New England Journal of Medicine; $223 for individuals and $1504 for institutions for Cell) are mostly paid with PUBLIC FUNDS. Yeah, you know, all those public COLLEGES and UNIVERSITIES, and the public and not for profit HOSPITALS and LIBRARIES.

It's tempting to shrug about something like this, but think about it: where do you think all those reporters and writers find out about the studies they write their stories about? Where do you think scientific and advances in social policy come from?

That's right, the sharing of (and building upon) prior research results.

And if that doesn't convince you, understand this: if information was tamped down the way these publishers would like, there wouldn't be a Living Donor 101 or Living Donors Are People Too.

Read Michael Eisen's op-ed piece in the New York Times.

2011 Statistics Crunching, part deux

2012-01-10T15:11:00.000-05:00

I'm not a marketing person.

I'm trying to be a marketing person, but the going is slow and treacherous - sort of like trying to dodge dog poo piles in the back yard at night.

BUT if one wishes to monetize, or prove how important/popular one is in one's chosen field, then one must learn to market and assess one's marketing attempts.

So....

My twitter followers increased 34% in December 2011.

And the facebook fan page rose 6% in 'likes' in the past 6 weeks.

(Now if I could just finish the LD101 renovation, and move this blog to its own url, I might be on to something.....)

Follow me on Twitter here

Like the Facebook page here

Might Have an Anxiety Problem If....

2012-01-07T14:52:00.000-05:00

Since the donation in 2008, I've developed an anxiety problem. Round about the one year mark, it was causing major impairment in my daily functioning (as the DSM likes to say), so much so that I procured a Xanax prescription from my primary care physician.

I was plagued with insomnia. And when I could sleep, my dreams were all of the being-late-for-something-important, or being-inappropriately-naked, or other Freudian what have you. When my slumber was interrupted, which was often, my head would immediately attack with whatever might've been making me the least bit apprehensive, thereby eliminating any possibility of returning to unconsciousness. And no matter what form it took, my fears were always about safety and security - because that's what the experience of living donation stole from me.

For quite awhile, these bouts of panic and overwhelming worry were just as debilitating as my periods of depression or explosions of rage. Fortunately, all of these things have subsided, but not disappeared entirely.

To whit:

This morning I was jarred awake before daylight eked around the curtain. As I laid there, trying not to alert the dog to my status, I began obsessing about the smoke alarms. What should've been a normal mental note of "Check the battery, and find out where we stashed the one that should be in the upstairs hall" turned into a "OhMyGod, If There's A Fire We'll Die" and "Our Home Owner's Insurance Won't Cover-It Cuz Our Smoke Alarms Aren't Working".

Seriously.

My ever-patient SO knows what my early rousing means, so when he came in to kiss me before heading off to work, he said, "I hope you feel better." I turned to him as if it was the most natural thing in the world and said, "We need to go buy a smoke detector."

Understandably, he was very confused. But he played along, cuz that's what you do when you've been with someone for twenty years. It's too bad my neurosis makes him have to.

Kidneys Given to Non- US Citizens, Non-Residents 2000-2010

2012-01-06T14:49:00.000-05:00

These numbers were obtained from official OPTN data. I did not include non-citizens who claim the US as their primary place of residency, nor those whose citizenry was 'unreported'. I began this venture because a proposed OPTN policy sought to 'gather' data on this matter* and ultimately loosen restrictions on giving organs to non-citizen, non-residents.

See my prior posts on livers and hearts.

685 - the number of non-citizen, non-residents (aka foreign nationals) given deceased donor kidney transplants in the US between 2000-2010.

The biggest culprits, percentage-wise?

45% - Arrowhead Regional Medical Center - California

26% - UCI Medical Center - California

25% - St. Mary's Hospital (Mayo Clinic)

And by flat numbers?

47 - U of California, San Francisco, Medical Center

45 - St. Vincent Medical Center - California

43 - Jackson Memorial Hospital - Florida

27 - Brigham and Women's Hospital - Teaching affiliate of Harvard, Boston MA

What's important to keep in mind when assessing these numbers is that while Medicare has a provision for the treatment of end-stage renal disease, it is only available to US citizens. Resident, low-income, non-US citizens can obtain Medicaid benefits, but those programs are a mix of federal and state money, administered by the state, and generally do not pay for kidney transplants. Unlike liver, hearts or other organs, kidney disease has another viable treatment - dialysis, which Medicaid does cover.

Consider: the average onset of end-stage renal disease in the US is 64.4 years old, so the vast majority of kidney transplants are paid for by Medicare. Medicare's reimbursement rate is far lower than that of private insurance, and big-time lower than the hospitals' actual charges.

This means that all of the non-resident foreign nationals that come to the US are paying full freight for their transplants. Needless to say, this can be quite the lucrative revenue stream. Seen from that perspective, we can understand why the US hasn't followed in the footsteps of England or other countries in prohibiting non-citizen, non-residents from obtaining deceased donor transplants.

*You have every right to be confused. Why would they need to gather data when I have it in my hot little hands? Because the guy heading the committee is affiliated with a transplant program that makes big cash doing these sorts of transplants and he really doesn't want the gravy train to stop.

Living Donor 101 Stats for 2011

2012-01-01T18:01:00.000-05:00

It's difficult to know sometimes, in this vast universe that is the internet, if I'm doing nothing but blathering to myself (On certain occasions, it's probably better if I am). So, every month I consult my website statistics and add them to an ever-growing spread sheet for analysis. Before I focus on a new year of living donor advocacy, I thought I'd share some of 2011's highlights.

Unique visitors increased 103% from 2010.

Number of visits increased 97% from the year before.

Page views rose 86% from 2010.

Hits increased 83.6%.

To put this into perspective, www.livingdonor101.com launched in fall of 2008. Instead of adhering to a screwy fiscal year, I chose to go by the calendar, meaning that I couldn't really examine year over year numbers until 2010.

Unique visitors and number of visits rose 110% and 116% respectively over 2009, while page views and hits increased 84.7% and 86%.

In short, the traffic on LD101 for 2011 is almost 200% what it was just two years ago. While I have no illusions this will continue indefinitely, I'm quite proud of what we've* accomplished so far. Educating the public and providing support for living donors and their loved ones is important (and under-appreciated) work.

My immediate goals for 2012 are to complete the website renovation, and move the blog to its own website. I have a bunch of other thoughts and half-realized projects on the to-do list, but I'm not ready to put them out there for public consumption. Let's just say it could be interesting.

Happy New Year Everybody.

*Yes, each and every one of you that has contributed to this blog, or sent me an email, or mentioned LD101 in some way is partially responsible for this success.

Transplant Wait List - last one of 2011

2011-12-29T14:41:00.000-05:00

72,656 active wait list candidates as of December 29, 2011.

November 28: 72,625

October 18: 72,642

August 23: 72,318

Aug 4: 72,400

July 20: 72,345

July 10: 72,360

That's a .4% increase. So far, not quite the crisis we've been lead to believe.

Livers Given to Non US Residents (also not US citizens)

2011-12-28T14:15:00.018-05:00

The numbers below are regarding non-US citizens who reside some place other than the US who travel to the US solely for the purpose of a transplant.

In this case, a deceased liver transplant.

685 non-resident, non-citizens received a deceased liver transplant in the US from 2000-2010. so did 24,294 US citizens.

94 transplant centers total performed at least one deceased liver transplant on a non-resident, non US citizen during that time.

12 of the facilities gave at least 10% of livers to non-resident, non-citizens. All but 3 were children's hospitals. Those three were low volume centers, so even one non-resident, non-citizen affected the stat considerably.

Flat numbers*:

109 - Jackson Memorial Hospital, FL
50 - UCLA Medical Center, CA
41 - Mayo Clinic, FL
34 - University of Pittsburgh Medical Center - PA**
34 - University of California, San Francisco Medical Center
20 - Rochester Methodist Hospital - Mayo Clinic, NY

The troubling part of the OPTN proposed policy on these transplants is that it would make reporting one's residency and citizenship voluntary. In some ways, the proposed policy could be viewed as trying to minimize or hide these numbers from the American public. After all, foreigners who travel to the US for a transplant pay full freight; why wouldn't centers want to encourage the practice and maximize their bottom lines?

So what if nearly 700 US citizens were denied transplants of their own?

*bearing in mind that some centers do a huge number of transplants every year.

**might want to review the 2006 scandal at UPMC regarding their liver transplant program.

Heart Transplants for Non-Resident, Non-US Citizens, 2000-2010

2011-12-27T14:10:00.000-05:00

I pored through the data set and created spreadsheets for each organ, each transplant center, and transplanted US citizens and non-citizen, non-residents. I didn't count resident non-citizens, and there's always a small portion of 'unknown' which I also omitted.

4300 US citizens received heart transplants from 2000-2010*

So did 204 non-citizen, non-residents.

Cardiovascular Center of Puerto Rico gave 14% (1/7) of their hearts to non-citizen, non-residents, the highest percentage of any US transplant center. <- for adults. Primary Children's Medical Center in Utah gave 28.5% of their hearts to non-citizen, non-residents; as did Children's Hospital in Los Angeles.

Straight number-wise (Some facilities do a high volume of transplants so the flat quantity is actually a smaller percentage of total transplants done per year):

26 - UCLA Medical Center
25 - New York Presbyterian/Columbia
13 - Jackson Memorial Hospital
12 - Loma Linda University Medical Center

58 US transplant centers performed at least one heart transplant on a non-resident, non-citizen between 2000-2010. 15 are easily identifiable as children's facilities (IOW, I didn't bother googling the rest).

Should US citizens, when they sign their organ donor card, be informed that their hearts, etc may be given to foreign nationals who travel to the US solely for the purpose of a transplant rather than be allocated to their fellow countrymen?

Give me your thoughts in the comments.

*yes, my data included January of 2011, but I omitted that one month for easier stat crunching.

Guest Post- Living Kidney Donor Medical Evaluation Public Comment

2011-12-24T12:24:00.000-05:00

The proposed minimum requirements are based on recommendations from the Joint Society Work Group (AST, ASTS, and NATCO) to the OPTN Living Donor Committee. Where is the American Society of Nephrology, American College of Surgeons, American College of Physicians, American Society of Anesthesiologists, and independent donor advocates? It is dangerous to assume that the only experts are transplant industry insiders. As noted in this proposal, “a standardized medical evaluation process could improve the confidence of living donors in the safety of living donation.” Without a standard, there is no confidence nor is live donation “safe.” “Over time, analysis of the living donor medical evaluation could contribute to better outcomes.” By 2014, when the OPTN proposals for live kidney donor consent, evaluation, and follow-up are implemented and analysis started, we will be celebrating the 60th anniversary of the first live kidney donor. How much more time is needed? It saddens me that kidney donors get only the ‘minimum’. What about live liver lobe donors? We do have to start somewhere especially since there is a directive from HRSA (finally some oversight.)

Edit this proposal to state that a detailed health history and medical evaluation must be performed by physician/nurse practitioner and Anesthesiologist similar to such standards for all patients undergoing Presurgical Evaluation. A surgeon is not a medical expert unless he/she has completed a medical residency program, nurse practitioner training program or is board certified in nephrology. A surgeon can order and evaluate the necessary labwork and diagnostic studies unique to live kidney donation. Histocompatibility should be decided long before the medical evaluation and only after the potential donor consents to evaluation and surgery. A donor’s primary care provider should be an integral part of the donor team. A licensed or Board-certified mental health expert should complete the psychosocial assessment. Use clear language to state if after evaluation, the donor is deemed to be ‘marginal’ or ‘medically complex’. If so, state what this means to the donor’s short and long term health and insurability. Delete any language that encourages a donor to shop around until someone takes their organ offer. Please do not encourage this behavior.

Edit the proposal in language a lay person can understand. Public disclosure regarding the lack of high quality standards by OPTN member hospitals should be noted on websites such the OPTN or ACOT. A potential donor can then engage their primary care provider, family, and friends in an open and honest discussion about the evaluation, its risk, and the risk of a major surgery which results in altered kidney function for the remainder of the donor’s life. Wide variation in donor evaluation and suitability criteria; absence of written guidelines for evaluation, and identifying only 16 programs as Best Practices is alarming. There are over 200 OPTN member kidney programs.

All potential donors should receive copies of the transplant programs policies and procedures regarding live kidney donation. This information should be readily available since kidney recovery programs are required to develop specific protocols, policies, and procedures per the 2007 CMS Rules and Regulations for Transplant Programs and will be evaluated accordingly.

If living organ donation is a practice that society and medical establishments want to support, do they not have special obligations to ensure the safest possible passage for the living organ donor? (Benner, 2002) Safe passage starts with a thorough medical evaluation by the most qualified person available; not a minimum requirement. There are no mandatory policies to protect live donors; no regulation of centers or surgeons performing these surgeries, and no standards of care especially for informed consent, preoperative assessment or for donor aftercare. Again, we have to start somewhere.

Benner P. (2002). Living organ donors: Respecting the risks involved in the “Gift of Life.” American Journal of Critical Care. 11:266-68.

I am a board certified Adult Nurse Practitioner with an MSN in Critical Care Nursing. I recently transitioned from the Heart & Vascular Center to the Center for Biomedical Ethics at MetroHealth Medical Center in Cleveland, Ohio. I have over 31 years of nursing with experience in adult critical care, cardiology, electrophysiology, trauma, bioethics, end-of-life care, and organ donation and transplantation including living organ donation. I co-lecture the organ donation & transplantation and living donation sessions for the Masters in Bioethics program at Case Western Reserve University.

I am a living kidney donor (1994) and the sister of a deceased donor liver transplant recipient (1997). From 2003-2006, I served as a public representative on the United Network for Organ Sharing and Organ Procurement & Transplantation Network Board of Directors. I am serving in my 6th year on the Lifebanc Board of Directors and am the Secretary of the Executive Committee. I am an independent donor advocate; advocating for safeguards and standards of care for living organ donors with specific focus on their aftercare. I was a co-investigator in a MetroHealth Medical Center sponsored research study “Living Organ Donor Pilot Study: The Ethical Dimensions of Living Organ Donation from Donor Evaluation to Aftercare.”

Donna Luebke

Guest Post- Living Kidney Donor Informed Consent

2011-12-23T12:16:00.003-05:00

The proposed minimum requirements are based on recommendations from the Joint Society Work Group (AST, ASTS, and NATCO) to the OPTN Living Donor Committee. Where is the American Society of Nephrology, American College of Surgeons, American College of Physicians, Society of Laparoendoscopic Surgeons, American Society of Anesthesiologists, the National Institutes of Health, Uniformed Governors (attorneys), and independent donor advocates? It is dangerous to assume that the only experts are transplant industry insiders. The 2007 CMS Rules and Regulations for Transplant Programs mandated that donors must be fully informed of the medical, psychosocial, financial, and insurability risks. This proposal is not honest nor detailed enough to meet this requirement. This proposal’s background information starts in 2006 and is only a minimum requirement for consent. Therefore, I can only conclude that kidney donors have never been ‘fully’ informed of the risks or adverse events associated live donor nephrectomy? Thank you for this public disclosure.

According to Gail Agrawal, JD Dean of the KU Law School and past Chair of the Advisory Committee on Transplantation, state laws dictate informed consent and only the person doing the procedure can get the consent. This proposal does not include: legal expertise; language that is easily understood by ‘lay people’; document who is legally, morally, and ethically responsible for the consent of a live organ donor during a ‘process’—one that includes an ‘exhaustive and comprehensive’ medical evaluation and major surgery; the Living Organ Donor Network Insurance Policy; information about glomerular filtration rate, hyperfiltration or hypertrophy (if a do not know what kidneys do then not fully informed); an accurate and honest disclosure of the morbidity and mortality risks associated with general surgery including anesthesia risks; nor does it include non-donor (urological literature) and live donor nephrectomy risks separated out by surgical approach (open, hand-assisted or minimally invasive laparoscopic technique.)

This proposal is a blatant and purposeful attempt to minimize the risks associated with live donor nephrectomy when state that surgical risks include “scars, pain, and other consequences typical of any surgical procedure.” Donors deserve to know about the risks for a hernia, nerve damage/entrapment and chronic neuropathic pain, testicular swelling and infertility (ligating of gonadal veins), adrenal dysfunction (ligation of adrenal vein or direct injury to adrenal gland), chylous ascites, pancreatitis, small bowel obstruction, wound infection, reasons for reeoperations and readmissions, and the risk of dying. There is no magic fairy dust that protects us just because we are doing this noble, honorable, and self-less deed. For the laparoscopic procedure, surgeons must fully disclose the risks associated with pneumoperitoneum. Surgeons must fully disclose if they prescribe intraoperative Mannitol, Lasix, and Heparin and these risks.

What does it mean to lose 25-40% of your kidney function? Explain what “CKD” means. What does this mean for our long term cardiovascular health and wellness? Where are the non-transplant industry nephrologists? I want to hear from them (not a surgeon or a transplant nephrologist) what it means for us to have one kidney? Stop comparing us to the general population. Explain the allocation priority for living donors. Stop telling donors they will go to the ‘top of the list’ if develop ESRD.

Fully inform the potential donor that OPTN approved a Live Donor Kidney Program surgeon only has to do 2 open nephrectomies and 3 laparoscopic nephrectomies per year and they can be on any patient; not just a live donor even though a live donor procedure is technically more challenging. Disclose if the donor surgeon is a general surgeon OR board-certified urologist. Provide surgeon and center specific graft, recipient, and donor outcome data at 1, 5, and 10 years. One year outcome data is meaningless. Provide SRTR data as to the number of live donor nephrectomies at a particular program by year. Surgeons must fully disclose that we do not have a reliable and comprehensive live donor registry in the United States. Therefore, we cannot tell donors the procedure is ‘safe’, ‘minimal risk’ or ensure a valid consent.

Stop taking organs from the uninsured. Stop saying the recipient’s insurance covers ‘everything.’ Donors need to be fully informed of the recipient’s insurance coverage. Donors should be fully informed about Section 1881 of the Social Security Act which states that individuals who donate a kidney for transplantation are entitled to Medicare A and B. No donor should go to surgery without Medicare coverage. Medicare will pay for donor complications even years out from the donation (per Mark Horney, CMS). Medicare will cover all donors for at least 6 months.

Independent Donor Advocates: “The living donor recovery hospital must provide an independent donor advocate (IDA)…no thanks. Too many conflicts of interest if the IDA is paid by the transplant cost center and thus, not independent. According to CMS, this person ‘must not be involved in transplantation activities on a daily basis.” The donor should have the option of bringing their own IDA or IDA(T) whose sole interest is the well-being and safe passage of the donor. This person will ensure the donor has a thorough evaluation, informed consent process (will take names, get copies of all test results and any form the donor signs) and support the donor in withdrawing consent at any time. This is not a ‘contract’—it is an elective surgery.

Donna Luebke

Guest Post-Living Kidney Donor Follow-up Public Comment

2011-12-22T12:11:00.012-05:00

OPTN Proposal to Establish Minimum Requirements for Living Donor Follow-Up
December 23, 2011

Affected Policies/bylaws: 12.8.3.1 (Reporting Requirements); OPTN Bylaws, Appendix B, Attachment I, Section XIII (Transplant Programs) D (2) Kidney Transplant Programs that Perform Living Donor Kidney Transplants

The proposed minimum requirements are based on recommendations from the Joint Society Work Group (AST, ASTS, and NATCO) to the OPTN Living Donor Committee. Where were the American Society of Nephrology, American College of Surgeons, American College of Physicians, Society of Laparoendoscopic Surgeons, American Society of Anesthesiologists, the National Institutes of Health, and independent donor advocates? The policy is not just about ‘data’ but about the care and well-being of live kidney donors. It is dangerous to assume that the only experts are transplant industry insiders. Data collection and subsequent reporting of comprehensive, meaningful, and standardized quality indicators is the only way to define our risks both short and long-term. Quality indicators must be derived not only from the transplant literature but the more comprehensive medical literature including urology (nephron-sparing surgery, risks associated with pneumoperitoneum and unique to laparoendoscopic surgery), non-transplant nephrology (reduced renal mass and cardiovascular risks), anesthesia, and equal to the quality of such standards set by the American College of Surgeons Committee on Trauma. Approximately 150,000 live kidney donors have put themselves at risk in the United States (includes those who donated prior to 1988 and foreign nationals) with no registry or data to determine complication rates or adverse events for the healthy let alone the ‘marginal or medically complex expanded criteria’ live donor. We have lost any opportunity to capture comprehensive data on these donors. Live donors are a critical part of the transplant system yet there is little evidence that valued by the transplant community. Until we have comprehensive and reliable data, transplant surgeons cannot claim that live organ donation is ‘safe’ or “minimal risk.’ Without comprehensive and reliable data, we have no assurance that our programs are providing high quality care. But then, this proposal is only about the minimum requirements. Guess we have to start somewhere.

This proposal’s background information starts in 2006. Why not earlier? In 2000, the objective of the Live Donor Consensus Conference was to recommend practice guidelines for…all those concerned about the well-being of the live kidney donor. This conference endorsed a Live Organ Donor Registry that would collect demographic, clinical, and outcome information on all living donors. The rationale included concerns for donor well-being, limitations of current knowledge regarding long-term consequences of donation, the potential to evaluate the impact of changes in criteria for donor eligibility on the outcomes of donors, and the need within the transplant community to provide for quality assurance assessments.

A systemic review of the medical literature was conducted in 2000 (Merlin, et. al) to compare the safety and efficacy of laparoscopic live donor nephrectomy with the “gold standard” of open live donor nephrectomy. The authors concluded that the evidence-base for laparoscopic nephrectomy was inadequateM to make safety and efficacy recommendations. It will take “another decade or more to be confident of the risk following laparoscopic live donor nephrectomy.” In December of 2002, Art Caplan from The Univeristy of Pennsylvania decried that the lack of a national registry to monitor the health of living donors as “a scandal.”

Leventhal and colleagues (2004) wrote that the management of complications associated with laparoscopic nephrectomy is poorly described in the literature. There is a lack of regulation and uniformity in reporting of complications related to living donation as well as an absence of a national or international registry for tracking donor outcomes. The authors believe that unique complications related to live donor nephrectomy are underreported.

Gossman and colleagues (2005) published their experience on long-term outcomes of kidney donors. Surgeons and nephrologists have long argued that as long as the fate of all renal donors was unknown, the finding of normal renal function or blood pressure of those donors who were evaluated cannot serve as proof that unilateral nephrectomy is without adverse events. At an OPTN meeting Boston (October of 2005), we learned that OPTN living donor data was ‘woefully inadequate”; maybe 25% complete. More recent data analysis primarily by the OPTN Live Donor Data Task Force again concluded that OPTN data is “woefully inadequate” and therefore, meaningless. A decade later we are still debating what data elements should be collected with no accountability or enforcement of the mandatory data submission policy per the OPTN Final Rule. Thank you for this public disclosure of OPTN member noncompliance.

Perhaps now is the time to stop talking and start collecting meaningful data. No donor should be marked ‘lost to follow-up’ when health care facilities are required to document “next-of-kin” emergency contact information. Donors should have easy online access to the data that is submitted on their behalf and thus, verify its accuracy and completeness. It is our data, our outcome, our living donation story. Even better, now is the time for donors to self-report similar to the Boston Nurses study via online standardized survey tools. I am more than capable of submitting reliable and meaningful data with minimal cost to taxpayers.

Donna Luebke

Non US Citizens, the Wait List and Transplants in the US, part I

2011-12-21T20:02:00.001-05:00

Yesterday I was alerted to an OPTN proposed policy regarding resident and non-resident aliens, and this morning the NY Times ran a sob story on one undocumented resident (aka illegal) who needs a kidney transplant but can't get one cuz Medicare/Medicaid won't pay (and he doesn't have private insurance or the means to foot the bill himself).

Wouldn't you know that last night I came into the possession of official OPTN data from January 1, 2000 through January 31, 2011 regarding this very topic??

Demographics of those who received deceased donor transplants during that time:

216,497 US citizens (77 status unknown, btw)
6673 Resident aliens (non-citizens, but US is the primary residence)
1808 Non-resident aliens

While 1808 isn't a huge number, all things considered, it's still 1808 American citizens/residents that were denied an organ during that time.

211 hearts (this number remained fairly stable each year)
4 heart-lung
692 kidneys (varied from 42-86 per year)
35 kidney-pancreas
695 livers
68 lungs (increased steadily since 2000)
69 intestines

Where were these non-resident transplants taking place?

You'll have to tune in tomorrow to find out....

Oh yeah, one of OPTN's current proposed policies up for public comment is about this very thing, so you might want to check it out.

Informed Consent for the Living Kidney Donor - Public Comment for OPTN

2011-12-19T14:06:00.000-05:00

Here is my third and final public comment for this batch of OPTN's proposed policies. Deadline is Friday, December 23rd, so you still have time to write and submit your own. In fact, I recommend you do; things will never change unless we make our voice heard.

This missive is in regards to Proposed Policy 293, Informed Consent of the Living Kidney Donor.

It’s understandable why a LKD would seek graft & recipient survival information during evaluation, but of more importance to their well-being is the center’s LIVING DONOR mortality and morbidity stats. OPTN has collected short term data for over ten years(1), records which could easily be shared. Yet they are not. A prospective LKD has a right to know how a program performs and if it is compliant with federal reporting mandates. After all, the purpose of Informed Consent is to protect the patient, not ‘sell’ living donation or hide a transplant program’s flaws.

While the policy advocates ‘semi-quantitative’, ‘data-based estimates’, it is unclear on the details. Telling a potential LKD that 50% of transplanted kidneys survive 15 years may be true, but it is also disingenuous when more specific data is available from USRDS and SRTR.

- It is not enough to say “Current practice is to prioritize prior living donors who become transplant candidates”. It should be explained that prior LKDs are given four-points of LOCAL priority, equivalent to approximately one year of wait-time(2).

- It is inaccurate to define LKD’s surgical risks as “scars, pain, fatigue & other consequences typical of any surgical procedure”. Laparoscopic donor nephrectomies carry unique risks: hernias, nerve damage, testicular swelling requiring surgical intervention, adrenal dysfunction, chylous ascites and pancreatitis(3). Not informing LKDs of such possibilities could delay symptom recognition and timely treatment, resulting in adverse consequences and perhaps lawsuits.

- An LKD should not be told their remaining kidney will ‘grow’ but should be educated on hyperfiltration, hypertrophy, and glomerular hypertension. Do not assume s/he is unable to understand.

The authors admit that LKDs lose 25-40% of their renal function. However, A 10% reduction in GFR has been shown to significantly increase risk of cardiovascular morbidity and death(4). Most patients in the early stages of CKD won’t progress to kidney failure because they’ll die of a heart-related ailment(5). Yet only approximately 30% of transplant professionals discuss cardiovascular issues with potential donors(6). Policy 293 ignores the subject completely.

The proposed change to the Independent Donor Advocate description, that they not be involved with “recipient evaluation or the decision to transplant the recipient” is far from the original “must not be involved in transplantation activities on a routine basis” dictum set forth by CMS Final Rule 2007(7). OPTN has consistently ignored this provision of the IDA, allowing Transplant (or Living Donor) Coordinators to serve in this capacity. The purpose of the IDA is to provide a prospective LD with an advocate who does not financially or otherwise benefit from their donation, and who is not beholden to the transplant center for their livelihood. For Coordinators to assume this role is clearly a conflict of interest.

Because living donors receive no benefit for themselves, their informed consent process must be more rigorous than that of other surgical interventions(8), more closely resembling that of human research subjects. Ethically, it should always err on the side of too much information rather than too little. As a prospective LKD recently pointed out to me, it is impossible to fact-check a transplant center’s living donor pamphlet because of its overwhelming vagueness. If relinquishing a kidney is as safe as the transplant industry insists, there is no reason for subterfuge. Tell the public the truth.

(1) http://www.livingdonor101.com/Somsak-to-grahm-re-mandatory-data-2005.pdf

(2) http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_172.pdf

(3) Merlin TL, et al. The safety and efficacy of laparoscopic live donor nephrectomy: Transplantation. 2000 Dec 27;70(12):1659-66.

Vallancien G, et al. Complications of transperitoneal laparoscopic surgery in urology: review of 1,311 procedures at a single center. J Urol. 2002 Jul;168(1):23-6.

Handschin AE, et al. Laparoscopic donor nephrectomy. Br J Surg. 2003 Nov;90(11):1323-32.

Gruters, G. Living Donors: Process, Outcome and Ethical Questions. Work Group paper for the September 2006 meeting of the President's Council on Bioethics.

(4) Tonelli M. Should CKD be a coronary heart disease risk equivalent? Am J Kidney Dis 2007: 49: 8.

Emara M, Ragheb A, Hassan A, Shoker A. Evidence for a need to mandate kidney transplant living donor registries. Clin Transplant 2008: 22: 525–531.

(5) Brenner, B. Brenner and Rector's The Kidney, 8th edition. Saunders, 2008.

(6) Housawi, A.A. Transplant Professionals Vary in the Long-Term Medical Risks They Communicate to Potential Living Kidney Donors: an international survey. Nephrol Dial Transplant (2007) 22: 3040–3045.

(7) http://www.cms.hhs.gov/CFCsAndCoPs/downloads/trancenterreg2007.pdf

(8) http://www.organdonor.gov/research/acot05_2007.htm

Public Comment on OPTN Living Kidney Donor Follow-up Proposed Policy

2011-12-17T16:56:00.000-05:00

Here's my already-submitted public comment to OPTN on their proposed policy for living kidney donor follow-up. The deadline for comment is December 23rd, so there's still time to compose and submit your own.

The purpose of this missive is to respond to the proposed policy to establish minimum requirements for living kidney donor follow-up.

Nearly 60 years after the first LKD transplant, there have been no randomized controlled trials to determine the testing required for the evaluation of living kidney donors(1). Transplant programs have little data to guide them in deciding which donors are unacceptable, or which characteristics are associated with kidney disease or poor psychosocial outcomes after donation(2) . Published studies are either single center, susceptible to selection bias and small sample sizes, or compare living donors the general public, an incorrect cohort(3) .

Meanwhile, over the past 30 years, living kidney donors have gotten older, increased in pre-donation BMI, and decreased in pre-donation GFR(4). All are independent risk factors for cardiovascular and kidney disease, but we have no data to know how any or all of these variables affect a living donor’s short or long-term well-being.

In 2000, all transplant centers were required to report one year of living donor follow-up to OPTN, extended to two years in 2006. Over a decade later, more than 30% of living donors are still reported “lost” by one year(5), and transplant centers are given credit for forms containing nothing more than a date and an alive or dead status. Not once has OPTN penalized a transplant center for noncompliance.

Proposed policy 294 falls short of the 2000 mandate, and is even more deficient of the transplant industry’s real responsibility to living donors. Like the proposed evaluation policy, it ignores the living donor’s psychosocial status, and it provides no quality controls in terms of the LKD’s preparedness for surgery or life with one kidney. It concentrates solely on specific surgical aspects of living donation, and provides enough variation in reporting to make future analysis difficult. As stated in Proposed Policy 293, standardization can improve post-donation outcomes for living donors. So why the continued resistance?

Transplant centers have been given ten-plus years to comply with living donor follow-up, and for the past three they’ve been provided with notices detailing their deficiencies and inadequacies. Why give them another two or three years to implement a policy they should already be following? When punitive measures are not explicitly stated in the new policy (and none have ever been implemented), what motivation do transplant centers have to improve their behavior?

The transplant industry relies on autonomy or willingness to justify the morality of living donation. But living donors rely on the transplant industry to protect and care for them. This responsibility includes creating and enforcing policies based on clinical data, not supposition or opinion, and offering transparency about personnel and hospital performance, and patient risks and consequences.

Transplants recipients have a comprehensive and long-term registry. So do bone marrow donors. Meanwhile, despite international, medical and ethical calls for a living donor registry(6), living donors have been given the equivalent of a box of band-aids. A prospective LKD who refuses to agree to follow-up is not an excuse; they simply shouldn’t be taken to the operating room. Safety and public trust must be prioritized above obtaining a kidney for a recipient, or protecting surgeons or facilities from lawsuits.

For nearly sixty years, living donors have been told the equivalent of “We have no idea how this will affect you, but trust us, you’ll be fine”. It is no way to treat heroes. And neither is this inadequate policy.

(1) Joint Societies Consensus Document on the Evaluation of the LKD, 2011.
(2) Mandelbrot, DA. et al. The Medical Evaluation of LKDs: A Survey of US Transplant Centers. American Journal of Trans 2007; 7: 2333–2343
(3) Ommen, ES. Medical Risks in LKDs: Absence of Proof Is Not Proof of Absence. Clin J Am Soc Nephrol 1: 885–895, 2006
(4) Poggio, ED et al. Demographic & clinical characteristics associated with glomerular filtration rates in LKDs. Kidney Int. 2009 May ; 75(10): 1079–1087.
(5) Klein, et al. Organ Donation and Utilization in the United States: 1999-2008. American Journal of Trans 2010; 10 (Pt 2): 973–986.
(6) Consensus Statement on the Live Organ Donor 2000
-Vastag, B. LD Transplants Reexamined: Experts Cite Growing Concerns About Safety of Donors, 2003
-International Forum on the Care of the LD, 2005
-Lainie Friedman Ross, Mark Siegler, J. Richard Thistlethwaite, Jr. 2007
-Shokeir, AA. Open Vs Laparoscopic Live Donor Nephrectomy: A Focus on the Safety of Donors and the Need for a Donor Registry. 2007
-Emara, M. et al. in 2008
-Ommen ES et al. When Good Intentions are not Enough: Obtaining Follow-up Data on Living Kidney Donors. 2011

OPTN Public Comment - Medical Evaluation of Living Kidney Donor

2011-12-16T10:11:00.011-05:00

The following is my public comment to OPTN on their proposed policy for the Medical Evaluation of the Living Kidney Donor (#10). Deadline is December 23, so you still have time if you want to submit your own (please feel free to borrow heavily from mine if you'd like)

This missive is to express my concerns about the Proposal to Establish Requirements for the Medical Evaluation of the Living Kidney Donor, as posted on the OPTN website in late 2011.

While I believe the Joint Societies Consensus Document takes many strides forward in protecting prospective living donors, it still neglects the importance of the psychosocial evaluation. The psychological & emotional repercussions of living donation have been adequately documented, yet the aspects of the psychosocial evaluation are continually decided by those lacking expertise. Surgeons are not mental health professionals, and the psychological health and well-being of living donors deserves better than the input of three non-voting representatives whose livelihood depend on the transplant industry.

CMS Final Rule 2007 requires the psychosocial evaluation of prospective living donors but leaves the specifics vague. OPTN’s subsequent guidance document has not improved the situation. In 2003, Toronto General Hospital described their facility’s electronic LD evaluation tool in Progress in Transplantation(1). A year later, Schweitzer described the Heidelberg Method of pre and post-donation psychosocial evaluation, a follow-up of his earlier analysis(2). Yet as of today, no consistent or reliable tool or process has been developed(3) in the US.

In March 2008, Schroder’s analysis of existing literature produced a list of living donor motivations known to correlate with detrimental psychosocial consequences(4). Instead of implementing said data, OPTN’s guidance document uses the phrase “attempt to identify factors”, wording that would never be acceptable if used in regards to a prospective LKD’s GFR or creatnine levels.

Mental health professionals are not prescient nor psychic. Their training includes the adoption of specific behavioral skills, as well as the understanding and application of theories and quantifiable data. Obtuse suggestions such as “explore reasons” and “review issues” provide no guidance in interpretation or conclusion.

Much evidence exists between the psychosocial preparation of prospective living donors & post-donation psychosocial complications(5). The transplant process has focused almost exclusively on medical compatibility and suitability, when it should also concern itself with the personal dynamics between the donor and recipient(6). After all, a 2010 study from the University of Minnesota revealed 40% of their LKDs felt at least some pressure to donate, with the amount correlated to their degree of relatedness to their recipient(7). Since transplant centers offer no aftercare or support services for living donors, even though living donors overwhelmingly believe they should(8), a comprehensive psychosocial evaluation is imperative.

The emphasis in transplant must shift from procuring living donor organs to providing full and comprehensive care for the living donor(9). No matter how small the group at risk of psychosocial harm might be, its existence requires that our standard of psychosocial risk assessment be as rigorous as the physical assessment. OPTN policy should reflect this reality.

Sincerely,
Cristy Wright, M.Ed.

References:

1. O’Dell, MI et al. Electronic Psychosocial Evaluation Tool: use in living organ donor transplantation program. Prog Transplant. 2003 Jun;13(2):97-104

2. Schweitzer, J et al. Donor-Recipient Interaction: the Heidelberg Model of evaluation and consultation. Nephrol Dial Transplant (2004) 19 [Supple 4]: iv75-iv78.

3. Smith G, Trauer T, Kerr PG, Shadban S. Prospective psychosocial monitoring of living kidney donors using the short form-36 health survey: results at 12 months. Transplantation. 2004;78(9):1384-1389.

Walter M, Dammann G, Kuchehhoff J, et al. Psychosocial situation of living donors: moods, complaints, and self-image before and after liver transplantation. Med Sci Monit. 2005; 11:CR503-509.

4. Schroder, NM et al. Consideration of psychosocial factors in the evaluation of living donors. Progress in Transplantation, Vol 18, No. 1, March 2008

5. Schweitzer, J. et al. Psychological Consultation Before Living Kidney Donation: Finding Out and Handling Problem Cases. Vol. 76, 1464–1470, No. 10. 1464-1470.

6. Kane F, Clement G, & Kane M (2008). Live kidney donations and the ethic of care. The Journal of medical humanities, 29 (3), 173-88

7. Valapour, M. et al. Assessing Elements of Informed Consent Among Living Donors. Clin Transplant 2010 DOI: 10.1111/j.1399-0012.2010.01374.x

8. Schover LR, Streem SB, Boparai N, Duriak K, Novick AC. The psychosocial impact of donating a kidney: Long-term follow-up from a urology based center. J Urol 1997; 157: 1596–1601.

Fisher PA, Kropp DJ, Fleming EA. Impact on living kidney donors: Quality of life, self-image and family dynamics. Nephrol Nurs J 2005; 32: 489–490, 495–501.

9. Kane F, Clement G, & Kane M (2008). Live kidney donations and the ethic of care. The Journal of medical humanities, 2

Why GFR is Not Enough

2011-12-15T14:31:00.001-05:00

The current paradigm of Chronic Kidney Disease (CKD) is based on eGFR, or measure of renal function, alone. The kidney's job, however, is not only to discard what the body doesn't need, but to keep what it does.

Enter protein.

Under normal circumstances, protein molecules are too large to pass through the nephrons, the actual filter part of the kidney. Sometimes however, the glomerules can leak, allowing protein molecules to sneak through. Microalbumin or albumin is a type of protein that can be detected by a urine test and is usually the first signal of glomeruli damage.

Why is this important to living kidney donors? Because albuminuria is the hallmark of hyperfiltration damage, and hyperfiltration is what an LKDs remaining kidney does to compensate for the loss of 50% of the body's nephrons.

Hemmelgard et. al. analyzed how proteinuria (level of protein in urine) correlated with morality (death), myocardial infarction (heart attack), end-stage renal disease, and doubling of Serum Creatinine (harbinger of kidney malfunction) in folks with different levels of GFR.

Why this study is good: it examined nearly a million people residing Alberta, and thereby covered by government provided health insurance.

Limitations: 85% of Alberta is white, and less than 1% is black.

The researchers found that participants with heavier proteinuria had markedly increased adjusted rates of all four measured adverse effects.

- The adjusted mortality risk was two-fold higher for those with heavy proteinuria (>300 mg/g) and a GFR > 60, compared to a GFR of 45-59.9 and normal proteinuria.

- 60-90 GFR is considered 'mildly reduced', but "among the 597,870 participants, a graded increased in the adjusted rate of all-cause mortality was seen with rates of 2.2, 4.3, and 5.1 per 1000 person years among participants with no, mild, or heavy proteinuria, respectively."

Similar outcomes were seen for heart attack, initiation of renal replacement therapy (dialysis; done upon diagnosis of ESRD), or doubling of serum creatinine.

Here's their big conclusion:

In fact, patients with heavy proteinuria but without overtly abnormal eGFR appeared to have worse clinical outcomes than those with moderately reduced eGFR but without proteinuria. .

Similarly, a patient with an eGFR of 80 mL/min/1.73 m2 and 3 + proteinuria on dipstick reading (or ACR of 400 mg/g) would be assigned to stage 1 CKD under the current system—even though his or her age-adjusted risks of death and the need for renal replacement therapy would be approximately 2 and 10 times higher, respectively, than an otherwise similar patient with an eGFR of 50 mL/min/ 1.73 m2 but no evidence of proteinuria (stage 3 disease).

What does this mean? That a simple measure of renal function (GFR) is not enough to ensure our long-term kidney health and well-being. We must be aware of our protein levels and how we can control them too.

And don't let any doctor talk you out of it.

Hemmelgarn BR, Manns BJ, Lloyd A, James MT, Klarenbach S, Quinn RR, Wiebe N, Tonelli M, & Alberta Kidney Disease Network (2010). Relation between kidney function, proteinuria, and adverse outcomes. JAMA : the journal of the American Medical Association, 303 (5), 423-9 PMID: 20124537

Living Kidney Donors & Health Insurance

2011-12-14T13:52:00.056-05:00

The US, unlike other industrialized nations, has no national health care. Since post-WWII, health insurance has been provided and partially supplemented through one's employer. However, not every employers offers health insurance to their employees, and not every employee can afford their portion of the health insurance premium even if it is offered. Then there are the self-employed or unemployed.

In short, far too many people in the US (40-50 million) have no health insurance. And there is no rule prohibiting transplant programs from accepting uninsured living donors*, even if it means they will be unable to obtain follow-up and maintain their health, long-term.

Of living kidney donors in the US between July 2004 and September 2006, 10,021 had known health insurance status at time of donation, and 4852 did not.

- 18% lacked health insurance at the time of donation.

- 21% of black LKDs had no health insurance as compared with 13% of whites.

- 35.6% of Hispanics had no health insurance.

- 26.2% of LKDs aged 18-34 at the time of donation had no health insurance, compared with 15.2% of 35-49 year olds, and 11.2% of 50-64 year olds.

More interestingly, the researchers looked at OPTN regions for differences in accepting uninsured kidney donors, and more so, the region's general uninsured rate.

14.8% of Region 10 (Ohio, Michigan, Indiana) had no health insurance.

37% of Region 10's LKDs had no health insurance.

The authors acknowledge the limitations of their study, most notably the almost 4900 LKDs with no health insurance status (Why this was missing is not addressed. The transplant center should report the LDs' insurance status on the living donor registration form). However, the writers also suggest that this results in an underestimation of the true instance of uninsured living kidney donors, rather than over. Which is a pretty scary proposition.

*and even if a person has health insurance at the time of donation, they may lose their health insurance afterward, due to a layoff or otherwise. Until the Affordable Health Care Law was passed in mid-2010, for-profit health insurance companies could refuse coverage to a living donor for having a 'pre-existing condition'. Now, they can't outright deny coverage, but they can put the living donor into the 'high-risk' pool and make it not affordable.

Gibney EM, Doshi MD, Hartmann EL, Parikh CR, & Garg AX (2010). Health insurance status of US living kidney donors. Clinical journal of the American Society of Nephrology : CJASN, 5 (5), 912-6 PMID: 20413444

Living Donor Guidelines: Systematic, International Review

2011-12-13T13:44:00.001-05:00

Tong and Company looked at ten different living donor related guidelines published from 2006-2010 from Australia, New Zealand, Europe, Canada, United Kingdom, and two International contingencies (WHO & Amsterdam Forum), analyzing their scope, quality and consistency. Here's what they found.

- The guidelines varied in scope and lacked methodological rigor. In layperson's terms, this means the documents were all over the place, and made up out of thin air. <- Not based on clinical data.

- Few specific guidelines on women of childbearing age, despite the renal risk of pregnancy.

- Variations in cut-offs for hypertension, obesity, diabetes, cardiovascular disease, glucose intolerance, and malignancy (cancer/tumor). In the US, this translates into different evaluation policies for every transplant center. With such variability, it's impossible to implement quality control or gather/analyze reliable and valid data*.

- A thorough psychosocial assessment was recognized, but they didn't offer detailed guidelines on how to suss out altruistic motives, safeguard voluntary consent, or evaluate mental suitability*. <- All jokes aside, mental health professionals are not prescient or psychic. Their training includes specific behavioral skills as well as the comprehension and implementation of psychological theory. Expecting them to 'guess' about a prospective living donor's motives or mental status constitutes neglect.

- No quality of life tool has been created specifically for living organ donors.

- Few guidelines provided recommendation for supporting donors in case of recipient death, or adverse event (transplant failure, etc). In other words, we're on our own.

*One of OPTN's current proposed policies discusses living donor evaluation, but it still provides very little in the way of national standards, and does NOTHING to increase the clinical basis for those guidelines. It also disregards the importance of the psychosocial evaluation. Submit your own comment - dealing Dec. 23, 2011.

Tong A, Chapman JR, Wong G, de Bruijn J, & Craig JC (2011). Screening and follow-up of living kidney donors: a systematic review of clinical practice guidelines. Transplantation, 92 (9), 962-72 PMID: 21959214

Organ Trafficking Case Reveals How Government Fails Living Donors

2011-12-08T20:02:00.001-05:00

Bluntly put: Nancy Scheper-Hughes is a bad-ass cloaked in a demure anthropologist's body. Her work on behalf of organ trafficking victims is unparalleled. Now, she's written a no-holds-barred article on the recently plea bargained Rosenbaum case.

Counterpunch: The Rosenbaum Kidney Trafficking Gang

An excerpt:

But my attempts to get the attention of transplant societies, to alert health officials at US Health & Human Services, UNOS, Medicare, The New York Commissioner of Health, the media – The New Yorker Magazine , 60 Minutes, and, finally, (at the suggestion of the NY Commissioner of Health) a NYC FBI agent in 2002… led nowhere.

Nobody, it seemed , cared about transplant trafficking.

Later:

When I learned on a documentary film trip to Moldova that some young men recruited from economically demolished rural villages there ended up supplying kidneys to hospitals in New York City I reported this information (verified by officials at the US Embassy in Chisinau) to US Visa Control in Arlington, Virginia, to UNOS, to HHS, to The New York Commissioner of Health, the American Transplant Association and, finally, to a NYC FBI agent — to no avail.

Nobody cared about, or even believed in, human trafficking for organs. I went to the media, to CBS, to 60 Minutes and then to 48 Hours which did send an investigative reporter, Avi Cohan, to meet me in Israel where we spoke to patients who had had “undercover” transplants at hospitals in NYC Philadelphia, the Bay Area, and Los Angeles. CBS decided not to do the exposé. I was stumped. No one wanted to accuse surgeons, or prevent a suffering patient from getting a transplant, even with an illegally procured kidney from a displaced person from abroad.

Live Liver Donor's Story

2011-12-08T13:35:00.000-05:00

The author handed this to me this morning. I thought it was worth sharing.

http://baffledbabyboomer.wordpress.com/2011/11/25/number-of-transplant-surgeons-who-have-donated-their-organs/

(once on the page, click on the title to open the pdf)

What's the Definition of Life Coach Again?

2011-12-02T15:07:00.000-05:00

UNOS publishes a quarterly magazine that primarily consists of puff pieces glamorizing the transplant industry. It's an insider industry periodical so this isn't surprising, nor is it is particularly controversial or ground-breaking.

In the last issue was the typical "Isn't this Great?!" coverage of the Cleveland Clinic's Donor WIN program. In short, four years after the feds determined that transplant centers must report two years of follow-up on their living donors, CCF decided to comply with the regulations by utilizing it as a marketing opportunity and sending press releases far and wide (some of you may recall the article in the Cleveland Plain Dealer some months ago).

Anyway, this particular article was penned by a woman named Ellen Brown. Through the power of Google, I was able to locate her LinkedIn page and professional webpage. On November 13, 2011, I sent Ms. Brown the following email:

Ms. Brown,

I read your recent article in the latest UNOS update magazine regarding the Cleveland Clinic's Donor WIN program with great dismay. Like Ms. Robison, who was profiled in your article, I too donated a kidney at CCF in 2008. Unlike Ms. Robison, I was not given the royal treatment. My informed consent process consisted of "You could die, but that's rare" (a lie), and "We've only had one complication" (another lie). Suggestions for my long-term health were no more than "Avoid NSAIDS and don't injury your remaining kidney".

After my surgery, I languished in PICU/Recovery for more than four hours while my husband and immediate family were sent to a room where I never arrived. Each time I regained consciousness I asked when I could see my sister (my recipient), a precursor to being taken to my room, and on every occassion the nurse avoided eye contact and mumbled "I'm sorry." Meanwhile, my husband consulted duty nurses who told him "We've lost your wife". Instead of recovering a floor down from my sister, I ended up in a different building with staff who'd never dealt with a living kidney donor. In retrospect, considering the circumstances, I was very fortunate not to suffer any post-operative complications.

A week following the transplant, I called Audrey Caplan, CCF's Transplant Coordinator, because I had just received news that the graft had failed due to lack of perfusion. I was audibly crying and upset. This Coordinator, whom Ms. Damo referred to as 'excellent', offered me meaningless platitudes and promised to call me back with more information. Three years later, I'm still waiting for that phone call.

At my one-month follow-up, my surgeon apologized "for what happened to [my] sister", never once acknowledging what he had done to me, or offering me a mental health referral. In 2010, I learned about the Donor Win program from an article in the Cleveland Plain Dealer. I was never informed or invited to participate in the program, even though it launched many months before my federally mandated two-year check-up.

It would be easy to dismiss my experience as an aberration (which is why I prefer not to disclose my personal story), but I assure you, it is not - at the Cleveland Clinic nor across the country. After my abandonment at the hands of CCF, I began to research: academic journals, Medicare legislation, public health policies, etc. My intention was to understand and come to terms with what had happened to me and my family. Instead, I discovered a consistent and systemic pattern of living donor neglect by the government and transplant industry extending back many decades.

It sounds conspiracy-theorist I know, but the facts are undeniable.

- OPTN only began collecting social security numbers on living donors in 1994, leaving forty years of living donors' fate completely unknown.

- A decade after the Secretary of Health implemented a federal mandate of one year of living donor follow-up, 40% of living donors are reported 'lost'.

- In 2009, OPTN's own LD data task force reported their database to be 'woefully inadequate' and useless for analysis or research. Not a single program has been penalized for noncompliance.

- There are no national standards of living donor evaluation, selection, treatment or follow-up, only 'voluntary guidelines'. In 2007, the transplant industry had an opportunity to implement such standards, and they refused. Every transplant center makes up their own rules, and is therefore accountable to no one.

- 20-30% of living donors experience depression, anxiety, anger, PTSD and other psychosocial difficulties, yet not a single program offers structured aftercare or support services.

I could continue for pages, but I've already taken up enough of your time. I'm not naive enough to believe this missive will cause a major epiphany in your belief mystem. My only hope is that you will consider that perhaps the public face of living donation is not always the real one. If you'd like to know more, I encourage you to read Deborah Shelton's 2005 series in the St. Louis Dispatch, as well as those written by Laura Meckler.

Sincerely,
Cristy Wright, M.Ed.

Over a week passed with no response. I found an alternative means of contacting Ms. Brown (a form on her website, as opposed to the email address I had previously discovered and used), indicating that I had sent prior correspondence and would be writing about such on my blog the following week.

So here we are.

And in case you're wondering why this event is worthy of a blog post (because believe me, I've been ignored by far more important people than Ellen Brown of Shaker Heights, Ohio), please refer to the post title.

Ellen Brown calls herself a Life Coach.

To be fair, I take issue with so-called Life Coaches, mostly because anyone can assume the title and hang out a shingle. It is unfair and potentially dangerous to the public to conflate Life Coaches with professionally trained mental health practitioners who possess Masters' degrees and PhDs as well as licenses and certificates that require Continuing Education to maintain.

But stunts like this certainly do nothing to alter my opinion.

So yes, Dear Readers, Ellen Brown is no run-of-the-mill writer of medical-industry propaganda. She also claims to "help people navigate challenging life transitions with courage, hope, and optimism".

Except apparently, if you're a living donor. Or if you disagree with something she says.

Wonder if her clients know that?

Living Donor Follow-up: Associated Press article, and guest commentary

2011-12-01T09:59:00.000-05:00

Available for public comment are three OPTN proposed policies that directly affect living donor care and follow-up. Read and respond here:

AP reporter Neergard threw the problem out for public consumption here.

Fellow living kidney donor and living donor advocate Jane Zill had to this to say (which I concur):

I think this is a wonderful article. Ms. McLear should be commended for her advocacy and Ms. Neergaard for her reporting.

However, in my opinion, news of inadequate data collection, variability in center practice, and lack of medical follow-up of living donors is old news. The most important story now is about the continued failure of UNOS/OPTN to protect living organ donors. UNOS/OPTN has had many, many opportunities to create policies that enhance living donor safety since it’s inception in 1986, and yet, it is still debating policies regarding minimal two year data collection that has been mandated by HRSA, has not acted to create a national system to prioritize former donors who progress to organ failure, and resists attempts to create standardized evaluation and informed consent protocols for living donors (which jeopardizes donor and recipient safety.)

Deficiencies in donor data collection have been noted for years, culminating with a 2008 Living Donor Data Task Force Consensus Report of UNOS/OPTN, which found that the data collected by UNOS/OPTN is “woefully incomplete for the purposes of research or informed consent.” The ramifications of this to the 109,000 who have become living organ donors in the U.S., and countless others abroad, are staggering.

I was a member of the Living Donor Committee of the OPTN (2007-2009), like Ms. McLear is now, but, came to realize that the conflict of interest within UNOS/OPTN regarding living donors is insurmountable because its membership is comprised of those with professional and financial interest in living donor transplantation.

It is not possible to promote living donation surgery as safe and the long-term consequences of nephrectomy as minimal, while meaningfully addressing the known or suspected attending problems, and informing the public of these problems. I believe that this is one reason that detailed, long-term data collection of living donors has been actively avoided by UNOS/OPTN and its member centers. An absence of data means an absence of information – as the saying goes, “See no evil, hear no evil, and speak no evil.”

Two years worth of data will not address the long-term health of living organ donors. I am tired of the rhetoric about new UNOS/OPTN proposed policies, and tired of the public funding the processes of UNOS/OPTN policy making that have been shamefully unproductive.

My concern about this article is the impression it creates that UNOS/OPTN only now realizes the serious lapses in safe guards for living organ donors and in data collection, and that it is quickly moving to create policies to remedy these lapses. These lapses have been discussed for years along with hype and debate about meaningless policy proposals.

Ms. McLear said it all when she stated, “Who’s taking care of the donor after surgery? Really no one is.” Allowing UNOS/OPTN continued authority over the care and follow-up of living donors is akin to allowing the National Rifle Association to create policies regarding gun sales. The conflict of interest is obvious and creates an unsafe climate for the public. UNOS/OPTN will never serve the best of interest of living donors, but will always serve the interest of its member centers and of its industry. Our most pressing need is not another round of useless UNOS/OPTN policy proposals, but to remove authority for the care of living organ donors completely from UNOS/OPTN and place it with an entity that is free of conflict of interest regarding living organ donation. If we can accomplish this, we will finally be able to collect the data on living donors needed for informed consent and after care, as well as establish crucial protections for those who become a living organ donor.

Jane Zill, L.I.C.S.W.

Living Kidney Donor, 1991

OPTN Living Donor Committee, 2007-2009

OPTN Living Donor Data Task Force, 2008

OPTN Wait List Watch, part 6

2011-11-28T15:10:00.000-05:00

Today: 72,625 active wait list candidates

October 18: 72,642

August 23: 72,318

Aug 4: 72,400

July 20: 72,345

July 10: 72,360

Bone Marrow Donors vs. Living Organ Donors

2011-11-23T17:08:00.001-05:00

I had occasion in the past few days to explore the infrastructure of the US bone marrow transplant system, which naturally lead to comparisons with living organ donors.

Organization

National Marrow Donor Program - est. in 1986

United Network of Organ Sharing (UNOS) - est. 1986

NMDP is listed as a contractor on the Department of Health and Human Services website. The analogous organization would be UNOS. UNOS is the contractor that manages OPTN, the Organ Procurement and Transplantation Network, just as NMDP manages the C.W. Bill Young Cell Transplantation Program.

Underlying Federal Legislation

C.W. Bill Young Cell Transplantation Program
Stem Cell Therapeutic and Research Act 2005

National Organ Transplantation Act (NOTA 1984)

Who Handles the Data?

The Center for International Blood and Marrow Transplant Research (CIBMTR) - established in July 2004, combining the National Marrow Donor Program (NMDP) and the International Bone Marrow Transplant Registry (IBMTR)

Scientific Registry of Transplant Recipient (SRTR)

Budgets (funding from HRSA, aka 'the taxpayers'):
Taken from FY 2012 budget available here.

Cord Blood Stem Cell Bank - 12 million (2010,2011); 14 million (2012)
C.W. Bill Young - 23 mil (2010); 24 mil (2011); 27 million (2012)

Organ Transplantation - 26 million (2011-2012)

Let's break that down a bit, shall we?

BMDP:

The program also receives income from financial contributions. Fees charged to donors for tissue typing - about $100 - these fees are waived when financial contributions are available to cover the costs. Fees charged for in-depth database searches - about $21,000, Fees charged to the transplanting hospital once a match is found and the stem cells have been transferred (no idea how much that is).

From OPTN's Finance Committee report June, 2011:

OPTN expenditures of $36,372,099 are expected to be funded by $32,987,202 in OPTN registration fees and $3,384,897 in appropriated federal funds.

Federally appropriated funding accounts for 9.31% of expenditures, the remaining 90.69% of funding is covered by OPTN registration fees.

Other Programs:

Be the Match Foundation - helps with costs not covered by insurance (income sensitive); pays donor registration fee; invests in research. 2010 Fiscal Report cites revenues of $13.3 million.

UNOS Foundation - This FY2010 report is a bit more confusing because it cites ALL of OPTN's finances, not just those from the Foundation. UNOS has other revenue streams, all of which are lumped in here too.

Data Services - $1.5 million
Mtg Fees - $337,000
Contributions - $522,000
Member Services - $236,000
Other - $578,000

UNOS fee - $6 million <- This line item concerns me. It is NOT the recipient registration fee paid to OPTN per federal mandate. So, is this the fee UNOS decided to charge for each living donor just cuz they could? If so, that certainly explains why they're so eager to round up more living donors.

Donor Follow-Up:

BMDP follows bone marrow donors 'until there is no complication'. They do not rely on hospitals to submit information, but contact the bone marrow donor directly. They also provide a longer-term registry for those bone marrow donors who wish to be included. Again, this entails self-report and direct contact with the donor.

OPTN meanwhile only offers two years of follow-up for living donors, regardless of condition. They rely on transplant centers to submit info, and despite giving centers credit for the form when one item is checked, 40% of living donors are still 'lost' by one year. There is NO long-term follow-up or data.

Donor Financial Assistance:

Granted I didn't search exhaustively, but I could find no hint of a foundation or program that assisted bone marrow donors with extraneous costs (travel, lost wages, child care, etc).

However in 2007, the US federal government saw fit to provide $8 million over four years for this issue, also income related. The question (and rightful criticism) is - why is he govt paying to fly poor people across the country so they can donate organs, especially when they probably don't have insurance and won't have access to decent aftercare?

So in short, if the Bone Marrow program can use their nonprofit to help out with extraneous costs, why can't UNOS? If the Bone Marrow folks can offer an effective, comprehensive long-term registry, why can't the same be done for living donors?

A shift of $8 million over a four year period should do the trick.

ETA 11/28/2011: I've been informed the $6 million fee is a $75 fee UNOS tacked on to the federally mandated listing fee required of every wait list registrant. Understand what I'm saying - the federal govt funds the wait list and its management with a listing fee. UNOS decided unilaterally that they needed/deserved more money so they tacked on an additional $75 for their own pockets. Because there's a Medicare benefit for those with end-stage renal disease, the bulk of that money is coming from the tax payers.

Some Recent Living Donor Related Links

2011-11-18T11:24:00.000-05:00

Two from Kidney Week:

Renal Function Declines in Living Kidney Donors

Live Kidney Donation Raises Hypertension Risk in Blacks

Elsewhere:

Abstract of the latest (cuz there's been many over the past decade) call for a govt funded and mandated living donor registry.

Wait List Watch:

72,840 active candidates

October 18: 72,642

August 23: 72,318

Aug 4: 72,400

July 20: 72,345

July 10: 72,360

Short List of How US Government and Transplant Industry Have Failed Living Donors

2011-11-11T14:29:00.001-05:00

1954 - First living kidney donor transplant. <- just for informational purposes.

1. 1972 - Social Security Act, Section 1881 [42 U.S.C. 139 rr], establishes a Medicare benefit for those diagnosed with end-stage renal disease, and their living donors.

"Any individual who donates a kidney for transplant surgery shall be entitled to benefits under parts A and B of this title with respect to such donation."

This benefit has never been put into place. If it had, not only would living donors never experience billing problems from complications and lack of mental health access, the US would have a comprehensive database of almost 40 years of living kidney donors.

2. 1994 - OPTN begins collecting social security numbers of living donors.

In other words, they have NO identifying information on any living donor prior to 1994. In addition, no quality control safeguards were implemented, so it's impossible to confirm accuracy.

3. 1994-ish - Living donors were given 'priority' points on the wait list if they ever found themselves in need of the same organ.

Unfortunately, they is a local prioritization, not a national one. AND because of the aforementioned SSNs, there is no pre-donation or time of donation information on any LKD wait listed who donated prior to 1994.

4. 2000 - The Secretary of Health signs a federal mandate requiring transplant centers to report one year of living-donor follow-up to OPTN. This was extended to two years in 2006.

In 2009, OPTN's own data task force determined the subsequent database to be woefully inadequate and useless for research of analysis. Ten-plus years later, reporting rates have not increased, and punitive measures have not been taken against any transplant program for noncompliance.

5. 2000 - CMS (Medicare) Final Rule establishes composition of OPTN's Board of Directors:

"At least 25 percent should be transplant candidates, transplant recipients, organ donors and family members. They should have with no ties to OPOs, transplant centers, voluntary health organizations, transplant coordinators, histocompatibility experts, or other non-physician transplant professionals, but the Board can wave this restriction for up to 50% of these members."

This does not appear to be adhered to or enforced in any way.

6. 2002-ish - The living liver widows of Danny Boone and Mike Hurewitz join forces to bring attention to the respective tragedies of their husbands' deaths. This resulted in NC and NY being the only two states in the US with living donor protections and policies (liver only). OPTN modified NY's law for itself - but only as 'voluntary guidelines', not as enforceable regulation.

7. In 2007, OPTN membership, consisting of transplant centers, pharmaceutical companies and laboratories, refused to implement national standards of living kidney donor evaluation, selection, treatment or follow-up. What resulted was a series of 'voluntary guidelines'.

To this day, each transplant center makes of their own rules in regards to living donation.

8. 2007 - CMS (Medicare) instituted a Final Rule, which provided for an Independent Donor Advocate who "must not be involved in transplantation activities on a daily basis". Four years later, this has not enforced or implemented. OPTN has allowed Transplant Coordinators, who are paid to schedule appointments and surgeries, to don the hat of IDA.

9. 2008 - State of NY ruled that private insurance companies were permitted to deny coverage to living donors as a 'pre-existing condition'. This is the current state of insurance for living donors. Also, some recipient's private insurance will only cover living donor complications up to a certain amount or within a certain time frame. None of them pay for mental health treatment.

10. A Joint Societies document on the evaluation of the living kidney donor admits there is no clinical evidence of the 'best' way to evaluate a prospective LKD to minimize risk and ensure long-term health and well-being. Fifty-plus years, 200,000 living donors, and they haven't even bothered to determine something so rudimentary as that.

Wow, that's a pretty depressing Top 10 list.

Mind-Blowing (not in a good way) Living Donor Headline of the Day

2011-11-09T15:50:00.000-05:00

From the Henry Ford Health System, via PRWeb:

Adult Living Donor Liver Transplant Safe.

On what planet are a 61% complication rate and 25% re-hospitalization considered 'safe'?

I just - seriously? - Do I even need to explain this?

And just to increase the irony, let me point out this little live liver donor article I saw yesterday (yes, really, yesterday):

The remaining 44 (53%) reported: intolerance to fatty meals and diarrhea (31%), gastroesophageal reflux associated with left liver hypertrophy (9%), incisional discomfort requiring pain medications (6%), severe depression requiring hospitalization (4%), rib pain affecting lifestyle (2%), and exacerbation of psoriasis (1%). Median satisfaction score was 8. Self-esteem diminished in 5%. Thirty-nine (47%) recommended improvements particularly more detailed informed donor consent and a centralized living donor liver registry.

And this was after a median 69 months post-donation.

Safe. I do not think that word means what you think it means, Henry Ford Health System.

Transplant Program Propaganda

2011-11-07T22:37:00.000-05:00

I found this is my Google alert, who knows why. It's a link to Johns Hopkins website, regarding their so-called "living donor follow-up clinic"

To whit:

Beginning in 2007, the Johns Hopkins transplant team has developed a new live donor clinical follow-up and research program. We created this program to ensure that we provide superior care to a population of individuals who have made a sacrifice to help save the life of another individual.

Total crap. OPTN made one-year of living donor follow-up mandatory in 2000, and extended it to two years in 2006. They warned the transplant programs that noncompliance could mean very nasty things. If Hopkins cared about their living donors, they would've established this clinic years before the feds told them they had to.

Furthermore, the follow-up info required by OPTN - Well, let's just say that a college freshman taking an Intro to Research Design course could do better. See here. The lack of concrete specifics has lead transplant professionals to write non-helpful things like "living donor complications" as a reason for re-hospitalization.

AND - notice the absence of any inquiry into the living donor's quality of life. Nothing about depression, therapy, anti-depressants or anti-anxiety meds. Nothing about insurance difficulties, nothing about financial problems as a result of the donation.

The moral of the story is this - don't be fooled by the hype. If you're a potential living donor, demand the center provide you with their living donor statistics. Not just how many living donors they have, but how compliant they've been with OPTN's data policy. Don't ask, but insist they provide you with a copy of all the LD data submitted to OPTN. If 'safety' really is their primary concern, they should no problem providing this info. If they refuse, I suggest looking to another facility.

Living Donation Related Quote of the Day

2011-10-28T16:25:00.000-04:00

"Transplant programs are eager not only just to save lives but also to get people into their programs because there's a lot of money to be made from transplants. So they are not always paying attention to the interests and needs of the would-be donor. There is a fundamental weakness in the living donor side of the transplant - there isn't much donor advocacy and there are no agreed upon standards for how to deal with assessment or make decisions about who is eligible to be a living donor. Without those standards, then there is danger all over the place..."

- Art Caplan, Director of the Center for Bioethics at the University of Pennsylvania, as quoted in Science and Theology News.

Two Living Donor Related Studies

2011-10-25T13:47:00.000-04:00

The first, a presentation at the Congress of the European Association of Urology: Chronic Kidney Disease Develops in Many Living Kidney Donors. 53% after five years, to be exact.

And the second: Reduced glomerular filtration rate due to loss of nephron mass may be an independent risk factor for atherosclerosis. The answer: yes.

OPTN Wait List Watch

2011-10-18T21:34:00.000-04:00

Today: 72,642 active wait list candidates

August 23: 72,318

Aug 4: 72,400

July 20: 72,345

July 10: 72,360

Postrel's At It Again - Promoting Living Donation and Forgetting the Donors

2011-10-07T15:19:00.000-04:00

On one hand, I suppose I should Virginia Postrel credit for getting paid by national magazines to say the same thing over and over again. But on the other, her constant refrain of "functioning kidneys for all" is incredibly annoying (and simplistic, but that's a post for a different time)

Here it is, another article in "the atlantic" (Hey, I wonder if they'd let me write a similar article on all the damaged and disenfranchised living donors out there?), and here is the comment I just left, copied here for your reading pleasure:

"Living donation is a low-risk procedure for the donor that offers life-changing rewards for the recipient"

While I'm glad that Postrel and the other living kidney donors mentioned in this article haven't, as of yet, suffered any ill effects of donating, her above statement is total horse pucky and she knows it.

According to OPTN's own data, 4.4 living kidney donors die in the US every year within 12 months of donation.

20% suffer physical complications: nerve damage, pancreatitis, adrenal dysfunction, testicular swelling and sensitivity, chylous ascites, intestinal blockage, organ laceration, etc. etc.

20-30% experience depression, anxiety, anger, PTSD, financial and other psychosocial consequences. Meanwhile, not a single transplant center offers support services or resources to LDs.

A joint-surgical consensus document recently stated that there is NO empirical evidence on the 'best' way to evaluate the prospective living kidney donor. In fact there are NO national standards of evaluation, selection, or treatment for living donors at all.

Over 300 living kidney donors have been waitlisted in need of their own kidney transplant since 1994. We have no idea about any living donor prior to that year because no one bothered to collect any identifying info on them before then (so 40 yrs of lost LKDs).

There is NO long-term data on living donors health and well-being. The Ibrahim and Segev articles have been touted as 'proof' of long-term safety but both are painfully flawed and neither draws the conclusion the media and industry hopes they do.

TRANSPLANTS ARE NOT CURES. The vast majority of recipients will need multiple transplants to achieve a 'normal' lifespan.

The average age of end-stage renal disease onset is 64.4 years. The growing 'need' is a result of our aging population. And the biggest reason for kidney failure - diabetes.

The ONLY way supply will ever begin to meet demand is if the US provides adequate access to health care geared toward the early prevention and treatment of diabetes and kidney disease. Of course, that's not as newsworthy as organ swaps or chains.

Every study done in a country (pakistan, india, etc) with legal or illegal kidney sales has the same conclusion: the kidney donor/vendor suffers increased health problems, greater financial difficulties, and a reduced quality of life post-donation (years after). Offering incentives benefits the recipient, the surgeon, and the transplant industry - everyone EXCEPT the person relinquishing the organ. The living public deserves to be treated as more than walking organ incubators.

See www.livingdonor101.com for references to every statement made in this post.

[PS. Some day I'm going to create a template of standard responses to these sorts of articles. Would save me a lot of typing time]

Levey's Living Kidney Donor Transplantation in the US, part III

2011-10-01T14:51:00.001-04:00

Yep, I'm finally getting back to this....

These data are consistent with the excellent long-term outcomes of young adults who underwent nephrectomy for trauma

The reference to this:

Forty-five year follow-up after uninephrectomy.
Narkun-Burgess DM, Nolan CR, Norman JE, Page WF, Miller PL, Meyer TW.

Even though it was published in 1993, this is the famous report on 62 WORLD WAR II veterans (all male, median age of 25) that has justified fifty years of kidney harvesting from the living. Bear in mind how much different Americans' lifestyles were then.

However, there remains some uncertainty because kidney donors typically are screened more carefully for comorbid conditions than controls in these studies.

This is actually important. It means that the control populations compared to living donors not only have two kidneys as opposed to one, they may have undiagnosed or undetected health risks (cholesterol, BMI, hypertension, etc). Once again, as many living donor advocates have argued, all of these studies are invalid because living donors are not being compared to their two-kidneyed counterparts.

Values for GFR were lower and values for albuminuria were higher with older age and longer time since transplant. In our opinion, these data are adequate to provide reassurance of the long-term safety of kidney transplantation from living kidney donors.

The sentence prior to this quote refers to a study conducted a median 12 years post-donation. We know that LKDs wait listed were usually 20 years out, and we know that GFR naturally declines with age, especially post-50. We also know that in the general US population, the average age onset of end-stage renal disease is 64.5 years of age.

SO, if the average living donor was 35 years of age in 1988 and 41 in 2008 (see Cooper/Davis reference below), 12 years just isn't a long enough time to draw any decent conclusions.

And just how in the hell are lower GFRs and higher protein readings a good thing?

Approximately 12% and 4% of donors have estimated GFRs or urine ACRs that meet the definition for chronic kidney disease (GFR 60 mL/min/1.73 m2 or urine ACR 30 mg/g)

This statement is gleaned from a meta-analysis done in 2006 which covers only a small percentage of all living kidney donors. Truth is, since NO ONE bothers to collect data on living donors (OPTN/UNOS just started in 2000, but only for one year, expanded to two years in 2006), there is NO WAY TO KNOW HOW MANY LIVING KIDNEY DONORS HAVE CHRONIC KIDNEY DISEASE.

It is now widely accepted that these kidney measures are associated with an increased risk for future adverse events in the general population, including all-cause and cardiovascular mortality and kidney disease, even after adjustment for known risk factors

And yet how many prospective living kidney donors are warned of these possibilities during the informed consent process? Very few. And how many would-be recipients are told they are exposing another person to these sorts of risk? None.

However, there have been no large studies of cardiovascular and kidney outcomes in kidney donors.

Exactamundo.

In our view, the uncertainty may be large enough to cause discomfort in counseling some potential donors and in medical decision making after donation.

Discomfort? Could that be more minimizing? Why don't we be honest and say it what we really mean - we have no idea what happens to living kidney donors long-term, but we know there are serious risks (especially in specific populations), yet we're going to ignore all of that because our priority is obtaining a transplant for the recipient.

Uncertainty in the decision-making process potentially compromises both donor autonomy and protection, thereby threatening the present system of living kidney donation.

The following sentence begins "in our opinion..." and the very next uses the verb "suspect". Last time I checked, the justification for performing an unnecessary surgery on a healthy person, and removing a crucial organ for the treatment of someone else wasn't to be based on opinions and suspicions. That is not good science.

The first line of the authors' conclusion says this: It is a privilege to counsel potential kidney donors and recipients and see first hand the benefits that accrue from the gift of life.

Some time ago, an employee of a transplant center made a remark on a living donor-related email list about her living donors' positive experiences. I emailed her off-list (she was a Transplant Coordinator, sometimes the double-hatted Living Donor Advocate), and cautioned her about making such statements, because not all living donors fared well, and such declarations served to disenfranchise their experience.

She responded in a very defensive manner, saying that HER donors hadn't expressed any problems at all. I posed the question, "Why would those living donors contact you? You were complicit in causing their trauma."

Obviously, I never heard from her again.

But of course, this is the problem with the transplant industry in general. They are divorced from the consequences of their actions, especially in regards to living donors. Instead, they surround themselves with other transplant center employees (see NKF's newest email list solely for 'living donor advocates' for example), which only serves to reinforce their very one-sided perspective.

We would never abide a substance abuse counselor who had never been exposed to the consequences of addiction. Why do we accept it in regards to those who mentor and counsel living donors?

Davis CL, & Cooper M (2010). The state of U.S. living kidney donors. Clinical journal of the American Society of Nephrology : CJASN, 5 (10), 1873-80 PMID: 20634322

Levey AS, Danovitch G, & Hou S (2011). Living donor kidney transplantation in the United States--looking back, looking forward. American journal of kidney diseases : the official journal of the National Kidney Foundation, 58 (3), 343-8 PMID: 21783290

On the Personal Front

2011-09-25T14:36:00.000-04:00

Left ya hanging on that Levey study, didn't I? Well, if you were resourceful and curious boys and girls, you probably dug it up yourselves by now. I apologize for the delay, I wlll get back to it eventually.

In the last month, I've had three deaths. My handsome of all handomes Dragon, a friend with a troubled past, and a member of my writers group. Needless to say, I'm tapped out on all the grieving and reminiscing and pondering of my own mortality. My coffers are on empty (literally; I just had a $1000 car repair bill).

And then there are the struggles to be an effective advocate. Know it or not, trying to change the world is a lot like swimming from Florida to Cuba: stressful, exhausting and full of hidden creatures that do their best to sting and maim you until you seek refuge in the boat. Part of the world thinks you're crazy, part of it watches in curiosity, and the rest flip the channel to NFL, NASCAR or American Idol.

I apologize for being vague, but I'm trying to maintain some dimension of professionalism. To know that your work (eg website) is responsible for a national media story, but have the reporter not bother to contact you? To have an editor request my recipient's permission to tell my living donor story? To have other folks dismiss me as a 'freelance writer' or 'LD with a website' when I, in fact, have a MASTERS DEGREE IN COUNSELING, run my own business, and single-handedly established the most comprehensive living donor resource available anywhere?

It's - um - it's maddening. I'm not even sure that's the right word.

So hey, I'm struggling. Welcome to the human condition. Hopefully I'll get a grip on it soon.

Readers Corner: The End of Everything by Megan Abbott

2011-09-18T15:21:00.001-04:00

Full Disclosure: I read. A lot. A stupid, stupid amount. Not all of it is worth talking about. But some of it is.

Ordinarily I'd be hesitant to pick up a book about an abducted teenage girl, since the idea has spawned an entire subgenre of commercial mystery-thriller. I have no interest in following another damaged detective navigating a city's seedy underground (and their own personal demons) in search of a dangerous and unrepetant predator. The whole idea is as cliche as my previous sentence. However, Megan Abbott takes a cue from Alice Sebold, and gives us the perspective of the missing girl's best friend, setting the story in a time before cell phones, the internet and public service announcements about 'stranger danger'.

Lizzie, like all thirteen year old girls, is trying to make sense of the world around her: her mother's late-night visitor, the subtle changes in her best friend Evie, and the mysterious allure of Evie's seventeen year old sister. When Evie is abducted, Lizzie finds herself seeking the attention of Evie's father, and trying to earn his approval and love by helping to solve the crime of Evie's disappearance. The book, like real life, has no tidy ending, but a real one, reinforcing the underlying theme that a young girl's sexuality is never a simple thing.

Levey's Living Kidney Donor Transplantation in the US, part II

2011-09-11T14:00:00.002-04:00

If you haven't, refer to Part I so you have some idea of what I'm talking about.

I want to back up for a moment and disclose that two of this paper's authors are, in fact, kidney donors. Their statement: "2 of us have donated a kidney to an unrelated
recipient".

But 'unrelated' is not synonymous with 'complete stranger'.

In one case, the author's husband needed a kidney so the author engaged in a kidney chain. While her organ technically was transplanted into a stranger, her motivation was to obtain a kidney transplant for her husband. The very same motivation for those of us who donate directly to a family member. This does not make her any more extraordinary than any other living kidney donor, and it does not make her opinion any more valid.

In the second instance, the author donated to one of her patients. While this may seem like a lovely gesture, it is, in fact, a violation of professional ethics. The intimate nature of helping professions (therapist, physician, etc) combined with the power dynamics of people in authority (teachers, clergy, etc) make adhering to strict boundaries incredibly important. It's the reason we judge those professionals who engage in sexual relationships with their patients/clients so harshly. It doesn't matter that donating a kidney was a helpful and positive act, it was still a blatant disregard for her professional boundaries. After all, the author only had one kidney to give. How will it affect her relationships with her other patients who were/are denied that kidney? Will she be willing to donate bone marrow to any patient in need?

Her decision to donate to her patient is problematic enough, but the fact that NO ONE in the entire transplant facility expressed opposition or concern, and actually CONTRIBUTED to this donation makes me suspicious of the facility's entire ethical foundation.

Now, back to the study....

Complications requiring surgical or radiologic intervention under local or general anesthesia occurred in 3% in 2 large series.

Two large series? Why didn't the authors just request the complication rate of ALL US living donors since 2000, when one-year of follow-up was required? Instead, they referenced a study on 1022 non-US living donors over the course of a decade. Compare that to the 6000+ living donors per year in the US. Their second is a single center look at only 750 LKDs. Again, why look at a single center when OPTN has info on all centers?

After kidney donation, measured glomerular filtration rate (GFR) decreases to 70% of predonation levels, and urinary albumin excretion is minimally increased, implying glomerular hyperfiltration and some increase in glomerular permeability to albumin in the remaining kidney.

Their reference for this statement is a study from 1983. Was there seriously nothing more recent and comprehensive?

These measures are not accompanied by complications or symptoms of chronic kidney disease.

No reference for this statement. What complications or symptoms are the authors referring to? And exactly what time frame are we looking at? Because we know that some LKDs have ended up with chronic kidney disease, end stage renal disease and kidney failure. So??

Survival appears better than for control populations matched for age and the absence of comorbid conditions that are regarded as contraindications to donation.

And here we are again, referencing the b.s. Segev study.

To be continued......

Levey AS, Danovitch G, & Hou S (2011). Living donor kidney transplantation in the United States-looking back, looking forward. American journal of kidney diseases : the official journal of the National Kidney Foundation, 58 (3), 343-8 PMID: 21783290

Mjøen G, Øyen O, Holdaas H, Midtvedt K, & Line PD (2009). Morbidity and mortality in 1022 consecutive living donor nephrectomies: benefits of a living donor registry. Transplantation, 88 (11), 1273-9 PMID: 19996926

Harper JD, Breda A, Leppert JT, Veale JL, Gritsch HA, & Schulam PG (2010). Experience with 750 consecutive laparoscopic donor nephrectomies--is it time to use a standardized classification of complications? The Journal of urology, 183 (5), 1941-6 PMID: 20303114

Physicians Remind Transplant Industry of Their Responsibility to Living Donors

2011-09-10T09:04:00.002-04:00

I was researching the other day and ran into this letter from 2010, a response to a study by Maples regarding the risk of live donor nephrectomies. It pleased me so much, I wanted to share it here:

http://jme.bmj.com/content/36/3/142/reply

[emphasis mine]

The practice of living organ donation requires living persons to be willing to donate and medical practitioners to perform the surgical interventions. In the case of the vast majority of kidney donors, there is no doubt of their altruistic motives; indeed one could argue that donating their kidneys constitutes a supererogatory act on their part. The moral difficulty, however, lies with the medical practitioner performing an invasive surgical procedure to remove a healthy organ from a healthy patient. Najma Maple and colleagues [1] assume that just because the majority of persons are willing to undergo medical procedure x with risk y, their willingness implies that it is morally acceptable for medical practitioners to perform x. This implication is problematic. Living kidney donation not only results in the obvious effects of any surgery (post- surgical pain, lost work time, etc.), but also carries both short- and long-term health risks. Short-term risks for donors range from infection to bleeding up to death [for a summary, see 2]. Long-term risks include a rise of an average of 5-mm Hg of systolic blood pressure ten years after kidney donation surgery [3] (in one study, 37.5% of donors became hypertensive [4]), and kidney problems up to end-stage renal failure [4,5]. From a population health perspective, living kidney donors are at high risk of progressing to end-stage chronic kidney disease and ultimately requiring either dialysis or a kidney transplant over their lifetime. Effectively, living kidney donation practice can no longer be considered as solving but exacerbating a future epidemic of end-stage kidney disease in a population, and for society to deal with in 20-30 years later. This population health problem will amplify future crisis of kidney shortage for transplantation and burden an already strained health care system.

The principle of nonmaleficence (do no harm) forbids a medical practitioner from performing actions that harm the health of a patient. In the case of renal transplantation (and a fortiori, in cases of transplantation of other solid organs), the risks to the donor are significant. Even if nonmaleficence were considered to be a prima facie duty, the risks to kidney donors are too great for the good gained for the recipient to override this fundamental principle of medicine.

Michael Potts, Michael Potts, PhD, Professor, Methodist University, Fayetteville, North Carolina USA
Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, Mayo Clinic, Phoenix, Arizona USA
David W. Evans, MD, Queens College, Cambrige, UK

References

1 Maple NH, Hadjianastassiou V, Jones R, Mamode N. Understanding the risk in living donor nephrectomy. J Med Ethics 2010;36:142-7, doi: 10.1136/jme.2009.031740.

2 Potts M, Evans DW. Is solid organ donation by living donors ethical? The case of kidney donation. In: Weimar W, Bos MA, Busschbach JJ (Eds.), Organ Transplantation: Ethical, Legal, and Psychosocial Aspects, pp. 377-81. Lengerich: Papst Science Publishers, 2008.

3 Boudville N, Ramesh Prasad GV, Knoll G et al. Meta-analysis: risk for hypertension in living kidney donors. Ann Intern Med 2003;145:185-96.

4 Azar SA. Nakhjavani MK, Faragi A et al. Is living kidney donation really safe? Transplant Proc 2007;39:822-3.

5 Kido R, Shibagaki Y, Iwadoh K et al. How do living kidney donors develop end-stage renal disease? Am J Transplant 2009;9:2514-19.

George Carlin - The American Dream

2011-09-06T13:27:00.000-04:00

Levey's Living Kidney Donor Transplantation in the US, part I

2011-09-05T20:43:00.001-04:00

It's that time again, where I don't just read a recently published academic article, but dissect it and examine its tiny little pieces.

From the abstract: Our perspective is that altruism is the motivation for most living kidney donors and the decision to donate represents a shared responsibility among the donor, the donor’s physician, and the team of professionals at the transplant center. Thus, sound knowledge of the benefits and risks to donors and recipients is required for informed decisions, and all parties share in the responsibility for the outcomes after living kidney donation.

The authors compare the demographics of active wait list candidates with those of living donors*. Here are their thoughts: Although the difference in age is expected, the persistent differences in sex and race-ethnicity may reflect barriers to access to donation, particularly socioeconomic and cultural barriers.

This use of 'expected' in regards to the age difference between those on that wait list and LKDs made me chuckle. Expected by whom? And just because something is expected, does that make it ethical or right or fair?

After all, OPTN's own documents admit that organs (esp kidneys) from deceased donors over the age of 50 are being discarded unnecessarily. And based on the Joint Societies' LKD Evaluation Consensus Document, a "GFR of 85 would be of less concern for a 60 year old man, since that value is above average for that age and there is less remaining lifetime for GFR to decline. In contrast, the same GFR of 85 approaches two standard deviations below the mean in a 25-year-old donor."

So imagine if all those 50+ deceased kidneys were utilized, and older folks were encouraged to become living donors because they were at less long-term risk than a younger people. Would that change the 'expected age difference' seen here?

As for the sex and race-ethnicity discrepancy, remember that the authors are pushing for increased living donation, not donation in general. African-Americans have a much higher incidence of diabetes, diabetes has a high hereditary component, and diabetes is the biggest kidney killer out there. If living donors are supposed to be uber-healthy, why would the authors advocate that folks at risk for future diabetes and kidney failure give up a kidney? In fact, maybe that's part of the reason the percentage of African-American living kidney donors is so low. But instead of that possibility, the authors blame less education, lower income, and inadequate medical insurance. To their credit, at least they acknowledge that distrust in physicians is most likely a factor. Considering a lot of the stories I've heard from living donors, I'd turn that around and say that perhaps the problem is that whites trust in the medical community too much.

Back to the article: The criteria for kidney donation are designed to select medically and psychologically healthy donors with minimal short- and long-term risk for complications of the procedure.

Uh, except: A. There are no national standards in the US for living donor evaluation, selection, care or follow-up. And B. their reference is the 2000 Amsterdam Forum which NO ONE in the US adheres to. Yeah.

Extensive and detailed guidelines have been developed for the evaluation of living donors in general and specifically for unrelated donors.

A. Not true. They're incredible vague and generic.
B. Guideline = VOLUNTARY. There's no guarantee any transplant center follows any of them at all.

The short-term consequences of kidney donation are well known.

Wait - what? There is ZERO data prior to 1994, only death data from 1994-2000, and even though two years follow-up has been required since then, 40% of living donors are still 'lost' by one-year. That pretty much amounts to anything but 'well-known'.

Mortality within 90 days is 0.031% and has not changed in the past 15 years.

Let's start with all my prior posts on the living donor mortality rate shall we?
First
Again
Still More
Once More - With Feeling

And their reference? The infamous Segev article. Have a refresher.

To be continued.....

*In a post earlier this year, I compared the demographics of deceased donor organ transplant recipients with those of deceased organ donors.

Levey AS, Danovitch G, & Hou S (2011). Living donor kidney transplantation in the United States-looking back, looking forward. American journal of kidney diseases : the official journal of the National Kidney Foundation, 58 (3), 343-8 PMID: 21783290

UNOS & OPTN's Board of Directors

2011-08-31T11:39:00.001-04:00

Final Rule 2000, aka CFR 42, Part 121 establishes membership criteria for OPTN Board of Directors, which should be composed of:

- 50% of members should be transplant surgeons or transplant physicians;
- at least 25 percent should be transplant candidates, transplant recipients, organ donors and family members. They should have with no ties to OPOs, transplant centers, voluntary health organizations, transplant coordinators, histocompatibility experts, or other non-physician transplant professionals, but the Board can wave this restriction for up to 50% of these members.

Anyone know the definition of 'voluntary health organization'? Me neither.

Some quick math:

41 elected members
50% = 20.5
25% = 10.25
50% of that = 5.125

SO, out of 41 OPTN Board Members, only 4/5 need to be NOT connected to all that blather above (Which is pretty f%$#ing pathetic imo, but I digress).

Let's see how they do.....

The first possible candidate is General Public Representative Rose D'Acquisto from St. Paul, Minnesota. I say possible because her short bio indicates "She began volunteering for LifeSource, her local OPO, after her husband's sudden death in 1996". Whether she still volunteers for them is unclear.

Our second is Michelle Desler. She just happens to be the neice of another long-time and repeated committee and board member, Tom Falsey (who does oodles of work with his local OPO).

And another questionable one: Lisa M. McMurdo, the director of the Division of Quality and Patient Safety in the New York State Department of Health, which puts her in charge of NY state's donor registry. I'm not sure how that doesn't make her a 'non-physician transplant professional'.

And um, that's it. Seriously. I couldn't find anyone else on that list who isn't one of those things listed in Final Rule 2000. Even giving the benefit of the doubt, I only came up with three and not the four or five dictated by law. ?????

Also, according to OPTN's website, the 'general public representatives' on the BOD are to consist of:

- transplant candidates and recipients
- living donors
- donor family members
- recipient & patient family members

They are:

David Burgio, former president/CEO of Berea Hospital, and current board member of KY's OPO. But he's a kidney recipient, so I guess that makes it okay.

Mary Carpenter, an advisory board member of Florida's OPO, and former committee member for the National Kidney Society. But she's a donor mother, so.....

Susan Lane Conrad. Here's her bio from the OPTN website:

is the chief executive officer of Iowa Donor Network. She is a living kidney donor. Conrad is currently serving her third term on the OPTN/UNOS board of directors, twice on its executive committee, as treasurer and as transplant coordinator representative. She currently is a member of the OPO performance metrics work group. Conrad previously served on the OPO, finance, living donor and liver and intestinal organ transplantation committees.

In addition to her OPTN/UNOS service, she is immediate past president of the Association of Organ Procurement Organizations and past president of NATCO-the Organization for Transplant Professionals, for which she also has served as treasurer. She is a recent member of the national Advisory Committee on Organ Transplantation. She has served on the editorial boards of Transplant Chronicles and Progress in Transplantation.

Let's pause for a moment.

This women is on her THIRD term. Is the public supposed to believe that not a single person in all of that time has expressed interest in being on an OPTN committee or its BOD? Especially for public rep, it's not as if there are broad qualifications one must meet; look at Michele Desler.

And just how in the hell did the CEO of an OPO become a PUBLIC Representative anyway? The fact she is an LKD adheres to the letter of the law, but certainly not the spirit. The idea of a'public representative' is to bring another voice into the fray, not to perpetuate the voice of the transplant industry which so overwhelms the conversation.

Rose T. D'Acquisto, mentioned above. She's a donor wife.

Michelle Desler, living kidney donor and niece of Tom Falsey.

Tom Falsey, anonymous kidney donor, director of special promotions for the Donate Life Foundation in Lanexa, KS.

Michelle Hagan, Director of Quality Improvement at Gift of Life Michigan.

Once again, how the HELL does a STAFF MEMBER of an OPO become a PUBLIC REP?? Isn't 'public' supposed to mean someone OUTSIDE that transplant industry??

Sandra Hickey, Director, Family Aftercare at Kentucky Organ Donor Affiliates.

M. Jill McMaster, who among other things, is a public education volunteer with Tennessee Donor Services.

Yes, an OPO.

Lisa McMurdo, I mentioned earlier....

Kenyon Murphy: A two-time liver recipient, he is honorary director of Georgia Transplant Foundation's (GTF's) advisory board. He has served as president of GTF's board of directors and also has been an active volunteer with Lifelink of Georgia.

Mary J. Nachreiner, a community/family services specialist at the University of Wisconsin Hospital organ procurement organization. But hey, she's a donor mother.

This is the FIFTH so-called public rep who is emeshed in an OPO.

Yes, I realize that Organ Procurement Orgs are supposed to limit themselves to matters of deceased donor donation, but some have stretched the boundaries on this (No, I will not name names). Keep in mind that something as innocuous as a Donate Life Month rally where living donors stand up and speak on the importance of donation and transplantation can give the public the idea that OPOs are advocating living donation. I understand why a number of LDs end up involved with an OPO (They've had transplantation touch their lives personally, and there are no living donor-related groups for them to join; plus the system is so lopsided toward the recipient, and a living donor has sacrificed their own health for the benefit of a recipient, so....etc), but at some point, that involvement HAS to eliminate them as a member of the public as defined here. The public is - well - the public: the unwashed masses, the NON-professionals. That's the freaking point.

And why, you may ask, did I delve into this miasma? Because....

OPTN is seeking new Board nominations!

Get your form here. Ignore all the questions specifically related to those who work in a transplant center, and get thee on the Board. And if you're not selected, contact the President of OPTN and demand to know why. If that doesn't work, you might try explaining your situation to the appropriate person at HRSA's Division of Transplantation (refer to the pdf chart). If you're really persistent, a friendly media and blogger types who'd love to point out obvious bias on the part of UNOS and OPTN. There are plenty out there.

Good luck; forms are due October 7th.

ETA: I am told that other OPTN committee and/or board members are repeats as well, it's just not noted on their official OPTN bio. In my vast library of documents (three HUGE tubs of which still need to be scanned into ye olde hard drive), I have meeting agendas, conference presentations, etc. from the early 2000s on. If/when I get the time, I'll wade through some of it and try to cross-reference names and titles.

ACOT Membership Roster

2011-08-24T11:50:00.049-04:00

ACOT meets this weekend in Baltimore, soon after announcing its new committee members. The complete roster is available here.

Most folks, you'll notice, are listed as being associated with transplant centers, hospitals, organ procurement organizations (OPO), health insurance companies, or employed as surgeons. A few folks, however, are mysteriously floating out there. Naturally, I took to websearching.

Thomas Beyersdorf, M.B.A.
Northville, MI 48167

Looks like Mr. Beyersdorf is the past CEO of the Organ Procurement Agency of Michigan, otherwise known as Gift of Life Michigan.

Wanda H. Jones, R.N., B.S.N., M.J., CPTC, CETC
Long Beach, CA 90802

Took me some effort, but I turned up this powerpoint presentation from a 2006 HRSA meeting entitled "How-To Basics in Initiating a DCD* Policy in Your Hospital". The presentation was conducted by OneLegacy, a (you guessed it), southern California OPO. Ms. Jones was, at the time, the Clinical Manager.

Jamie Marie Avolio McDonald, M.S.W., LISW
Albuquerque, NM 87111

She's currently employed at Presbyterian Health Services in New Mexico. They have an active deceased and living donor transplant program.

Cynthia P. Puryear
Glen Allen, VA 23060

Employed as a Senior Strategist, Corporate Communications at Mitchell Communications Group in Richmond, Virginia. More importantly, she's on the Executive Committee of the National Kidney Foundation's Living Donor Council.

Cynthia wants to be a “voice for living donors” and use her public relations and public speaking experience to educate and assess needs for families and professionals. She also wants to address legislative issues, medical concerns, and financial support for donors.

To be honest, I'm not sure what a lot of that means. Educate families and professionals about what - the option of living donation? Cuz that's not being an advocate.

What legislative issues does she want to address? Payment for organs (cuz - no) or increased protections?

And financial support - how so? To increase living donation or to ensure that living donors aren't paying out of pocket for complications due to the donation?

So there you have it, the 'mysterious' members of ACOT. When the only person who might speak for living donor issues is associated with NKF whose main mission is to "...prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by kidney disease and increase the availability of all organs for transplantation", I'm not feeling too optimistic.

*Deceased Cardiac Donor

Wait List Watch Update

2011-08-23T15:14:00.001-04:00

Active US waitlist candidates -

Today: 72, 318

Aug 4: 72,400

July 20: 72,345

July 10: 72,360

btw:

Transplants Done, January - May 2011: 11,485 as of 08/19/2011

Deceased and Living Donors, January - May: 2011 5,669 as of 08/19/2011

LKD Eval Document's Notes on Hypertension, Proteinuria and GFR

2011-08-17T13:25:00.085-04:00

Thirty pages is a lot to filter through, especially if one is lacking context or familiarity with the process or vocabulary of transplant. But where this document becomes interesting and somewhat important is in its appendicies. The information about hypertension, proteinuria, kidney function (GFR) etc, is more than is shared with prospective living donors and if known, can help a living donor candidate to protect themselves and make the best decision possible for their future health.

For example (page 19):
Caucasian hypertensive donor candidates younger than age 50 and non-Caucasian donors at any age with hypertension have a greater lifetime risk of ESRD and may not be suitable candidates for unilateral nephrectomy.

Proteinura (page 20): The most reliable way to measure urinary protein or albumin is by a timed urine collection with the albumin excretion rate reported per unit time or per gram of creatinine. Microalbuminuria is defined as urine albumin excretion > 30 mg < 300 mg/day in both men and women or > 17 < 250 mg/gm creatinine in men and > 25 < 355 mg /gm creatinine in women. Clinical proteinuria is defined as protein excretion > 300 mg/day in both men and women or > 250 mg/gm creatinine in men and > 355 mg /gm creatinine in women

GFR, or renal function (page 21):
Ideally, kidney function should be assessed with a technique, which directly measures GFR using inulin, an iodinated tracer or a radioactive tracer. However, these techniques are not widely available, and a 24-hour urine collection to calculate creatinine clearance is an acceptable alternative. The adequacy of the 24-hour collection should be confirmed by assessing whether it contains 20-25 mg creatinine/kg body weight for men and 15-20mg/kg for women. The use of a serum creatinine alone, even if converted to an estimated GFR using one of the currently available formulas, is not sufficient.

The biggest revelation is as follows:

Kidney function usually declines with aging, so cut-offs to accept a donor should vary based on age.

If you'd like, conduct a experiment. Search for the major transplant related websites (those with info about living donation) and see what they say about pre-donation GFR in prospective kidney donors.

Does it say the minimum cut-off is a GFR is 80? Now refer back to the italicized statement.

To whit: A GFR of 85 would be of less concern for a 60 year old man, since that value is above average for that age and there is less remaining lifetime for GFR to decline. In contrast, the same GFR of 85 approaches two standard deviations below the mean in a 25-year-old donor.

And the whizbang climax: It is recommended that potential donors have measured GFR that is one standard deviation below the mean for the donor’s age.

So what is the mean GFR corresponded to age? The document includes a table based on two studies, which I'm including below.

The standard deviation is a bit harder to pin down. Mathematically, standard deviation is a measure of how spread out the data set is. One standard deviation encompasses approximately 68% of the data set while two standard deviations includes roughly 95% of the total data.

I obtained the referenced 2009 study, which contains a plethora of its own graphs and tables. It repeatedly addresses "upper and lower limits of normal values" which they peg at the 5th and 95th* percentile (The measure used by the Cleveland Clinic and Mayo Clinic), but never addresses standard deviation. It still has its uses though - see below (click for enlargement)

Living donors generally have the I-Iothalamate GFR done, which is the first set of numbers not in parenthesis. Bear in mind these are PRE-donation numbers, and it's safe to say that the one standard deviation referred to in the consensus document would be higher than the 5th percentile listed here.

Compare these numbers to the one-size-fits-all 80 GFR cut-off currently used by the transplant industry. Think there's a big gap there? So do I.

*Because really high GFR can be indicative of other disease related issues, believe it or not.

Poggio, E., Rule, A., Tanchanco, R., Arrigain, S., Butler, R., Srinivas, T., Stephany, B., Meyer, K., Nurko, S., Fatica, R., Shoskes, D., Krishnamurthi, V., Goldfarb, D., Gill, I., & Schreiber, M. (2009). Demographic and clinical characteristics associated with glomerular filtration rates in living kidney donors Kidney International, 75 (10), 1079-1087 DOI: 10.1038/ki.2009.11

Consensus Doc: Evaluation of the Living Kidney Donor, part II

2011-08-16T14:25:00.002-04:00

[Note: Sorry for the delay, I've been up to my ears in IRS nonprofit exemption paperwork. ugh]

Where were we? Oh right, we were highlighting how after almost sixty years of harvesting kidneys from living people, the transplant industry still has no clinical evidence to support how they evaluate prospective LDs for adequate health....

Page 12, the psychosocial evaluation:

This evaluation must be performed by a psychiatrist, psychologist or social worker with experience in transplantation.

Here's the thing: psychiatrists are medical doctors, psychologists are PhDs. A social worker could be nothing but an undergraduate Bachelor's degree with a state license. Yet every state has licensed COUNSELORS, which are Master's level practitioners. Why aren't they mentioned here?

And exactly what does "experience in transplantation" mean? Knowledge of the recipient's side of the equation? Employment at a transplant center? Neither of these things makes one qualified to know the living donor experience or how to properly protect a prospective living donor from their own emotions or from a system whose overall message is "Donate! Donate!"

The document spends a page and a half outlining what should be included in the psycho-social evaluation. But most living donors report spending exactly ONE forty-five to sixty minute session with a social worker (if they're lucky, a psychologist) as the totality of their psych eval. Exactly how in the hell is a proper analysis supposed to result from that, especially when part of the time is spent by the social worker explaining about insurance issues and living wills and such?

This includes a realistic plan for donation and recovery, with social, emotional and financial support available as recommended;

This, in itself, would require more than one session!

In fact, under "Relative Exclusion Criteria":

Lack of or insufficient family, caregiver, social, and/or economic support

This isn't a Mental Status Exam (MSE) where the purpose is to determine if an individual is mentally incapacitated, and where the protocols and boundaries are well established. Living donation is usually rife with convoluted motivations, relationships, responsibilities, and emotions. As someone trained in mental health, I can say with certainty that the answers to the queries posed in determining the suitability of someone as a living donor cannot be satisfied in such a small window.

(And btw, 1 1/2 pages for the psycosocial evaluation, but 5 pages on the medical eval.)

On page 17 under "Absolute Exclusion Criteria" is this little nugget:

Active malignancy, or incompletely treated malignancy

And under "Relative Exclusion Criteria":

History of cancer, including metastatic.

In lieu of my usual snark, let me instead refer back to Loyola's recent press barrage, celebrating their decision to perform a double mastectomy on a woman - then take her kidney anyway. This was so worth bragging that it showed up in every major media outlet in the country. Really?

Remember: ASTS is seeking comments on this document.

Consensus Proposal for the Evaluation of the Living Donor, Part I

2011-08-12T14:09:00.091-04:00

As mentioned in my prior post, HRSA gave OPTN authority to develop living donor policy in 2006. For some unstipulated reason (as far as I can tell), HRSA and UNOS established a joint societies working group in 2010 to help develop these policies. This is confusing, mostly because OPTN has a plethora of committees to do this very thing, but also because the organizations chosen are all recipient-focused; they profit and benefit from living donor transplants:

American Society of Transplantation (AST)
American Society of Transplant Surgeons (ASTS)
Organization for Transplant Professionals (NATCO)

The fruits of their labor, a consensus document on the "Evaluation of the Living Kidney Donor", can be found here. Clocking in at 30 pages, you'll want to settle in.

Their charge was: “…provide recommendations to OPTN/UNOS regarding appropriate requirements for the medical evaluation (including psycho-social evaluation) and informed consent of potential living kidney donors as well as post-donation follow-up and data submission.”

Yet not a single member of the group is a mental health professional. In order to alleviate this oversight, they appointed a psychologist, psychiatrist and social worker (no counselor, hmm), but gave them NO VOTING RIGHTS in the final document. Good to know we mental health folk are still viewed with such disdain by the medical community :-)

A highlight from page four: The formal acquisition of detailed long-term follow-up information on donor outcomes may require extramural organization and financial support, and should not be considered an essential component of transplant center compliance.

Good to know the health and well-being of living donors is less important than obtaining transplants for recipients.

Page Seven: The stipulation that transplant centers will provide potential donors with both national and center-specific outcomes from the most recent SRTR center-specific report. This information should include, but not be limited to the center’s 1-year patient and graft survival, national 1-year patient and graft survival, and notification about all CMS outcome requirements not being met by the transplant center.

This is recipient data. Why aren't living donors given national and center-specific data on living donor deaths, complications and the like?

Baseline risk of ESRD is the same as those in the general population with the same risk profile.

Should they develop CKD, their progression to ESRD may be more rapid than people with two kidneys.

It's good to see this admission considering the official stance of the transplant industry has always been that living donors are 'healthier' than the general population, so their reduced GFR doesn't have the same meaning.

Page 10 is a doozy:

Potential Longer-Term Financial Risks:
• Loss of employment or income;
• Impact on the ability to obtain future employment including, but not limited to military service, law enforcement, aviation, and fire department employment;
• Impact on the ability to obtain or afford health, disability, and life insurance; and,
• Future health problems experienced by living donors following donation may not be covered by the recipient’s insurance.

Just yesterday I read a blog post on a major mom-centric site written by the wife of a would-be recipient who said "all expenses are paid by the recipient's insurance", and she referred her readers to a site run by UNOS. The site doesn't use her exact wording (although I've read it in hundreds of feel-good articles about living donation) but it does hedge on the issue with the phrase "required postoperative care". Required by whom? To what end?

Disclosure initially, and as a part of the final step in donor acceptance or refusal, that selection policies and protocols may vary significantly among reputable centers, specifically in accepting, or declining donors who may be at increased medical risk.

Yoo-hoo, read between the lines! This means there are NO standards for living donor 'acceptability'!

Page 11: However a normal medical evaluation cannot accurately predict future risk of ESRD, especially in a very young donor.

In my post about waitlisted living kidney donors, I noted what while 34% of all living kidney donors were between the ages of 18-34 when they donated, 63% of LKDs waitlisted also fell into that age range. While future risk of ESRD can't be predicted, informing a prospective living donor of the above fact would be the ethical thing to do.

This is one of my favorites (so much so that I will bold):

To date, there have been no randomized controlled trials to determine the testing required for the evaluation of living kidney donors.

That's right, folks. For all the transplant industry's talk of 'minimal risk' and 'safe', they don't even know the best tests to run to properly evaluate a prospective living donor. After 50 years and over 100,000 living donor transplants and they haven't figured that much out? Hm.

CHECK IT: ASTS is seeking comments on their consensus document, so read and decide for yourself.

OPTN's Current Living Donor Policies

2011-08-11T13:43:00.000-04:00

In 2006, HRSA gave OPTN the regulatory authority to develop policies regarding living donation that would have the weight and authority as policies governing deceased donation. What they've accomplished is viewable on the OPTN website here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_172.pdf

Of approximately 31 policy points:

- 9 are vacant and yet to be written, including "informed consent" and "independent donor advocate" and "long-term follow-up" and "insurance".

- 14 duplicate deceased donor organ policies, including "transporting" and "ABO matching", so in essence benefit the recipient.

- And 8 apply to the actual care of living donors.

Of those, six concern reporting requirements*. The other two address the allocation priority given to prior LKDs.

Hm.

*The requirements the centers aren't complying with anyway. See here.

UNOS/OPTN Increases Registration Fee

2011-08-06T13:43:00.003-04:00

See page 9 of http://optn.transplant.hrsa.gov/SharedContentDocuments/2011-06_Policy_Notice.pdf

"The OPTN Board of Directors approved an increase in the OPTN patient registration fee from $585 to $603, subject to final approval by HRSA."

Know what's really interesting? Transplant centers are only legally required to pay a fee for folks who are listed for a deceased donor organ. In the early part of the last decade, when living donors made up about half of all transplants, OPTN decided they wanted paid for that too. But that's an OPTN policy, not federal mandate.

Guess they had to pay for Walter Graham's $500,000+ yearly salary.

ETA: Check page 25 of UNOS 2009 Form 990 to the IRS.

OPTN Policy Change: Who's Responsible for Living Donors?

2011-08-05T13:43:00.000-04:00

From http://optn.transplant.hrsa.gov/SharedContentDocuments/2011-06_Policy_Notice.pdf

To quote: Beginning August 29, 2011, if your transplant program operates on living donors, you will be responsible for all elements of the living donation process, which includes, but is not limited to, consent, medical and psychosocial evaluations, perioperative care, and required follow-up reporting on the donor to the OPTN.

The reason behind this clarification is that some living donors live great distances from their recipient. So they'd have their evaluation at one center while traveling to another for the procedure. OR they'd have their evaluation and surgery at one facility but seek care for complications or post-donation issues at another.

Notice the policy says "all elements". Wonder if that includes billing and finances?

Living Donor Follow-up - Still Dismal 8 Years Later

2011-08-04T16:20:00.001-04:00

The notes and presentations from OPTN's June 2011 meetings just became available and I had the opportunity today to glance at the Living Donor Committee's slides.

Just in case you don't understand what you're looking at (and for the benefit of the search engine bots that crawl through here now and again):

Of all living kidney donors from July 1, 2008 through June 30, 2009, only 63.5% were known to be either ALIVE OR DEAD one measely year after donation. This jumps to an equally pathetic 66.8% for living liver donors.

Sadder still is that there was evidence of a urine analysis in only 38.2% of ALL living kidney donors in that period, and a liver function test for only 50% of liver donors.

In a prior post, I talked about the prior year's cohort (mid 2007 thru mid 2008), and indicated that "15 transplant centers had ZERO follow-up on ANY of their living kidney donors during that time period, and only 29 were 100% compliant."

Good news: 8 kidney transplant programs were zero percent compliant, as opposed to 15.

Bad news: only 26 were 100% compliant, down 3 from the year before.

As for living liver transplant programs:

- 6 centers reported on ZERO percent of their liver donors (5 the prior year)
- 10 centers reported on 100% (down from 14 the year before)

Reminder: This federal mandate has been in effect since 2000. For the past three years, OPTN has sent each transplant center statistics on how well/dismal they are in following this policy. But here we are in 2011 and not a single program has been disciplined for noncompliance.

**Waitlist Watch**: 72,400 active candidates, up from 72,345 on July 20 and 72,360 from July 10.

Running Behind, in the Meantime ...

2011-08-01T13:00:00.000-04:00

Read this article just written by the great Deborah Shelton, friend of living donor advocates everywhere: http://www.chicagotribune.com/health/ct-met-living-donor-risks-20110731,0,7795430.story

And her mini-essay on why she writes what she does: http://www.chicagotribune.com/news/tribnation/chi-reporting-cautionary-information-about-organ-donation-20110801,0,5230533.story

I'll be posting some remarks on the article soon, not to mention some other interesting stuff about pre-donation GFR, and my thoughts on the 'evaluation of the living kidney donor' consensus document from a join societies' work group (and who are the societies - that's right, transplant surgeons and folks who benefit from living donor transplants).

Meanwhile, if you haven't, surf over to Living Donors Matter's website and fill out their Living Donor Story form. All information is kept private, and used to help improve protections and conditions for current and future living donors.

Transplant Center Encouraging Solicitation

2011-07-23T13:36:00.024-04:00

Only three years ago, the entire transplant system was a'twitter about the ethical ramification of recipients soliciting for a living donor. The issue was so profound that the entire "Frontiers of Ethics in Transplantation" conference was dedicated solely to this one question.

But it's 2011. Not only has the transplant industry gotten suspiciously quiet on the topic of living donor solicitation, it appears that they're actually educating and encouraging it.

Exhibit A: Yale-New Haven Transplant Center's newest brochure. For recipients, of course.

The smarmiest part of this whole thing, is that it attempts to absolve the recipient of any adverse consequences to the living donor. It advises the would-be recipient on how to ask a loved one for a kidney, but then says, "Let them know that neither of you needs to evaluate medical risk or make medical determinations."

Really? A prospective living donor shouldn't evaluate the risks to themselves and their loved ones if they die, are maimed or otherwise? A would-be recipient shouldn't contemplate the sacrifice they're asking someone to make for them?

Why doesn't the pamphlet just say "Trust us, the all-knowing and all wise transplant center. Don't worry your pretty little head about what could go wrong. We'll take care of everything."

*sigh*

On the other hand, at least any living donor contemplating using YNH will know where they're prioritized. And it sure ain't first.

Minority Living Kidney Donors with ESRD or Wait Listed (so faux pt 3)

2011-07-22T10:22:00.000-04:00

I'm pulling material from two sources today: the OPTN dataset I requested, and an article recently published by Cherikh (see citation) to look at minority living kidney donors and their risk of end-stage renal disease and/or being wait listed in need of their own transplant.

Those are two different things because not everyone who is diagnosed with ESRD is wait listed. Some are content on dialysis and some choose not to have a transplant. Some receive a 'pre-emptive' transplant are never wait listed.

According to my data set, from 1994 through March 2010:

124 or 43.5% of LKDs wait listed were White.
117 or 41.1% - Black.
29 or 10.2% - Hispanic.
7 or 2.5% - Asian.
5 or 1.8% - American Indian/Alaska Native
1 or .4% - Hawaiian or other Pacific Islander
2 or .75 - Multiracial

Contrast that with the total number of living donors, according to OPTN's site:

75,640 or 70.6% - white
13,753 or 12.8% - black
13,078 or 12.2% - hispanic
109 or .01% - ubiquitous unknown
2831 or 2.6% - asian
663 or .6% - alaskan/native american
615 or .57% - pacific islander
499 or .46% - multiracial

Sooooo..... African-Americans compose 12.8% of total living donors, yet make up 41.4% of LKDs waitlisted.

Problem.

Here's where Cherikh's analysis of LKDs with end-stage renal disease comes in. She only looked at a sample of total LKD population because (if I haven't said a hundred times before) UNOS/OPTN only started collecting identifying info in 1994, so it is limited, but it says alot about those living kidney donors at risk for ESRD disease within a short period of time (less than 20 years).

Under 35yoa at time of donation:
50.3% of all black LKDs (compared to 32.9% white)
67.8% of black LKDs with ESRD. (compared to 24.1% white)

Evidence has been building about the correlation between age at time of donation and increased risk factors for kidney and cardiac disease. This cooroborates the suspicion that the more years spent with reduced kidney function, the greater the risk of developing these conditions.

62.7% of black LKDs with end-stage renal disease were 35-49yoa when diagnosed with a mean age of 42.6. White LKDs with ESRD, meanwhile, had a mean age of 56.3.

Years from donation to ESRD for black LKDs:

18.6% - 0-5yrs (>10% white)
37.3% - 6-10yrs (33.3% white)
25.4% - 11-14yrs (40.7% white)

Not only are black LKDs significantly younger than white LKDs at time of donation, they are at a much higher risk of ESRD at a much earlier age. There are many possible reasons for this: hereditary/genetic kidney disease factors, diabetic tendencies, access to healthcare, lifestyle, etc. and it's impossible to speculate based on these numbers.

It does, however, stress the need for greater informed consent and closer scrutiny during evaluation, as well as the importance of follow-up care and lifestyle maintainence post-donation.

Cherikh WS, Young CJ, Kramer BF, Taranto SE, Randall HB, & Fan PY (2011). Ethnic and Gender Related Differences in the Risk of End-Stage Renal Disease After Living Kidney Donation. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons PMID: 21672160

HLA matching and minority transplants

2011-07-21T14:24:00.003-04:00

In 2003, the US kidney allocation system was loosened to eliminate HLA-B similarity. (Improvement in anti-rejection meds made this possible) During the first six years after the change, total number of deceased donor transplants rose 23% in comparison to the six years prior to the change, including 40% increase for minorities.

There appeared to be no adverse effect on graft survival after two years.

And that part nags at me a bit. They tracked for six years, and only looked at the two year graft survival rate? Why didn't they include the five-year rate? Sure, their sample rate would be reduced by approximately 3/5, but considering they were dealing with nearly 109,000 transplants, and the transplant industry routinely publishes living donors studies with ten to twenty subjects, I'm thinking 40,000+ would still be considered valid.

Obviously I have no way of knowing, but my concern is that the five year isn't quite so rosy. And what about the cancer rate in the recipients due to the increased use of anti-rejection meds? Any studies forthcoming on that?

Ashby VB, Port FK, Wolfe RA, Wynn JJ, Williams WW, Roberts JP, & Leichtman AB (2011). Transplanting Kidneys Without Points for HLA-B Matching: Consequences of the Policy Change. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons PMID: 21672159

Journalistic Integrity - Fail

2011-07-20T15:17:00.007-04:00

A recent google alert dropped off an article in Bethesda Magazine entitled "Desperately Seeking Survival". Aside from the piece being "all over the place" as a living donor advocate cohort of mine described it, the article is also chock full of those annoying statistical and otherwise errors I adore so much.

Like most websites, I could've left a comment online, but I decided to send a letter to the editor instead. To whit:

As a living donor, I must comment on Matthew Boswell's "Desperately Seeking Survival" due to its misrepresentations and omissions.

Boswell states: "UNOS is considering giving preference to younger people on the list—those likely to get more years out of a donated kidney. Someone like Greer, who is approaching 60, would likely be out of luck."

The proposed UNOS kidney allocation policy says nothing of the kind. Currently, recipients skew much older (34.7% are 50-64; 26% are 18-34) than deceased organ donors (22.2% and 17.6% respectively). The proposed policy suggests age-matching organs and recipients so that a kidney expected to survive 20 years isn't transplanted into a recipient only expected to live five. The document also revealed that thousands of viable organs from donors over the age of 50 are being discarded, and would now be utilized, resulting in a greater total number of transplants done each year.

"As it is, 18 people on the national transplant list die each day"

In 2002, UNOS allowed "inactives" to remain on the kidney waitlist indefinitely. As of 2007, 1/3 of the kidney list was considered inactive, meaning they were unable to have a transplant even if an organ became available. According to Delmonico and McBride's analysis in 2008, 52% of the deaths on the waitlist are inactives, effectively cutting the 'official' mortality in half. Also, if a candidate dies within one week of being removed from the list, it is counted as a 'wait list mortality'.

Boswell's discussion of wait list growth is also incorrect. While active registrations did grow approximately 5% per year from 1999 through 2003, there was a slight decrease in 2004, and UNOS has reported a 'flattening' since 2007.

4.4 living kidney donors die each year in the US within 12 months of surgery. Approximately 20% experience short-term post-op complications such has hernia, pancreatitis, chylous ascities, adrenal dysfunction, nerve damage, intestinal blockage, testicular swelling and sensitivity, etc. 20-30% suffer from depression, anxiety, anger, PTSD, financial or other psychosocial difficulties. Meanwhile, not a single transplant center offers aftercare or support services.

There is no long-term data on living donors' health and well-being. Even though centers have been required to report one-year follow-up since 2000, 30% of living donors are 'lost' by the one-year mark, and OPTN's own data task force reported the data as 'woefully inadequate' and useless for analysis or research in 2009.

Reduced renal function means a lifetime higher risk of hypertension, cardiac disease and death, and kidney disease and death. Since 1994, nearly 300 living kidney donors have registered on the wait list in need of their own transplant.

The question of compensating living donors is abhorrent. Published studies from every country with legal or illegal organ sales has reported negative outcomes from the kidney donor. It's a great system for the surgeons and hospitals, and mostly positive for the would-be recipients, but means death, maiming and reduced quality of life for the kidney donors/vendors. Not surprisingly, everyone quoted in Boswell's article in support of compensation is not a living donor.

A simple web search would've revealed a committed group of living donors who have worked tirelessly for years to increase protections and standards for living donors while supporting and helping those the transplant industry has abandoned. How is it that Mr. Boswell could pen such a lengthy article without including a single one of their names?

Yeah, I had a lot to say. Here's the response I received:

Hi, Cristy.
Thanks for writing with your thoughts on Matt Boswell's organ transplant story.
I'm sure you can appreciate that any story in a print publication is limited in terms of how much it can include in a given amount of space. We strive to be as fair and accurate as possible within those limits, and both I and the copyeditor who fact-checked the story were satisfied with his representation.
I can't publish all of what you wrote--we edit letters to the editor both for clarity and for space--but I would be happy to publish your thoughts on living donors, since you are one. I would, however, need to be able to say what city you live in. Just let me know if you'd like me to do so.
Again, thanks for taking the time to write.
Best,
Lisa Shroder
Managing Editor
Bethesda Magazine

Just for the record, fact-checking means cooroborating information from a third source...UNOS and OPTN's own websites list active versus total candidates, so where the HELL did these editors look??

Secondly, really - these editors will allow a writer to propose an idea as controversial as ORGAN SALES but not require even a single sentence on why that might be a catastrophic fucking idea?? On what planet is that defined as 'fair and accurate'?

And finally, "But I would be happy to publish your thoughts on living donors, since you are one."

Ahem. I'm not just a living donor. I'm one of the people who clean up the mess the transplant industry and irresponsible and uncaring media folk like yourself create when they perpetrate the lie that living donation is 'safe' and living donors are nothing but organ offers for poor, sick recipients.

I didn't say that of course. Instead, I said this:

Lisa,

Unfortunately, I can't allow any editor who claims to be satisfied with a story this overrun with errors and misconceptions to accurately represent my views. Entertaining the ideas of an entitled recipient like Sally Satel and a deluded renegade like Dave Undis, but not speaking to a single living donor or IDA is far from an adequate journalistic standard.

The Narrative Inquiry in Bioethics, an academic journal, is assembling an entire issue to the ethical considerations of living donation. I encourage you and Mr. Boswell to read it.

In retrospect, I should've pointed her to Deborah Shelton's work too.

Look, I know what it is to be an editor, and I know what it is to have unhappy readers. But there's a vast difference between some thin-skinned musician whining about a reviewer who didn't like their record, versus someone who actually knows something pointing out that your writer got his facts wrong, especially about important things that affect people's - you know - lives. Yes, you support your writer and you even explain how sometimes "these things happen, stuff falls through the cracks", but you most certainly do not refuse to correct the errors then blame it on 'clarity' and/or 'space'. Not if you want to keep your journalistic ethics intact.

**Wait List Watch**: 72,345 active candidates.

LKDs wait listed for transplant, part II

2011-07-17T16:47:00.003-04:00

One of the important questions surrounding living kidney donation, especially in terms of those diagnosed with end-stage renal disease, is how many years lapsed between donation and onset of disease.

Painfully, due to our country's complete neglect of living donors, we don't have an answer to this question. According to my data set, out of 285 LKDs listed for transplant, they only this info on 15% of the LKDs in question.

Yes, that's right, 85.1% of the living kidney donors who have been listed for transplant since April 1994 donated pre-1994 so they NOTHING on them.

The reason this pisses me off (aside from the obvious) is because in order for these LKDs to be listed, they had to see an actual specialist. In other words, a hospital had to evaluate and jump through administrative hoops to list them for the transplant.

Why the HELL didn't someone gather this information?? They bothered to ask and notate that said person was a prior living kidney donor, so how much freaking work would it have taken to say "Oh hey, and when did you donate?"

And how much flipping effort would it have taken the UNOS person/people who deal with wait list registrations to make a FUCKING PHONE CALL and find out when the LKD donated??

Forty years of living donors are lost* because everyone was too lazy to ask a simple question. Repugnant.

*and the rest of us screwed

Living Kidney Donors Listed for Transplant, part I

2011-07-13T10:24:00.004-04:00

Four months ago I requested data from UNOS on LKDs who had been waitlisted in need of their own kidney transplant. Even though the first living kidney donor transplant was in 1954 and UNOS was up and running in 1988, no identifying info was collected on living donors until 1994 making tracking impossible prior to that date. A local four-point waitlist priority was given a bit later, which made pinpointing prior living donors on the waitlist easier.

In my vast files of articles, I have earlier data on waitlisted LDs, but nothing as comprehensive as what I requested and received. I thought some comparison might be in order:

Total number of wait list registrations of known living kidney donors

115 - January 1995-June 2005
121 - January 1996-May 2006
169 - January 1996-December 2007*
285 - April 1, 1994-March 31, 2011

Both the 96-07 and 94-11 charted the years of first listing. When I compared the same years line by line, 94-11's numbers for many years were higher than 96-07. I have no idea why this may be, but I did want to point it out.

Also, 96-07 includes 9 additional LKDs from 1987-1993. Since my data has nothing prior to April 1994, the most accumulative total as recently as March 31, 2011 is most likely 294.

Age at time of donation is unknown for 167 of the 285 (122/169 also unknown), which is most likely the result of having no social security numbers prior to 1994.

Of 285 total, 118 known age at time of donation:
74 were 18-34 (63%)
38 were 35-49 (32%)

Compare that to national data on all living kidney donors from 1988 forward, according to OPTN's website:

49 were 11-17 yo (.046%)***
36,877 were 18-34 (34.4%)
48,294 were 35-49 (45%)
20,724 were 50-64 (19.3%)
1242 were 65+ (1.2%)
total: 107,188 (including 9 unknown)

So, and this requires a bit of inference, unfortunately; only 34% of total living kidney donors are 18-34 at time of donation, but 63% of LKDs waitlisted were that age when they donated?

Not good springs to mind.

***btw, the b.s. 'guidelines' OPTN passed in '07 cautioned very strongly against using LDs under the age of 18 yet 5 of the 11-17 year olds came in 2008 and 2009. Way to be ethical and put the living donor's health first transplant programs!

Transplant Waitlist Watch

2011-07-10T09:11:00.003-04:00

I posted some UNOS-originated slides not too long ago which charted the not-growth of the active kidney waitlist since 2000. The other day, one of my independent donor advocate cohorts suggested I add a little note to each blog post with that day's active waitlist numbers, just to counter all the propaganda coming from the transplant industry about the 'growing organ shortage'. Lovely idea, I think. She even helped me out by providing some numbers she noted over the past few months:

April 29th: 72,330
May 11th: 72,244 <- what's with the big drop there?
May 23rd: 72,298
July 5th: 72,319

And today: 72,360.

Where do I procure this information? OPTN's website, of course: http://optn.transplant.hrsa.gov/

Living Kidney Donor Chronic Fatigue Broadcast in Germany

2011-07-09T11:35:00.009-04:00

Christiane Geuer, a living kidney donor in Germany, sent me information about a television broadcast she worked her butt off to make happen. As expected, the actual broadcast is in German, but the following also includes a rough translation/transcript of the program:

[Note: Not so long ago, a living donor zealot from Europe tried to tell me that Europe's livng donation system was superior to America's for a number of reasons. I concurred that universal health care would make a difference, at least assuring that living donors could seek out preventative treatment, but that it wasn't the perfect situation she thought. I provided examples from the literature, as well as from European living donors I spoke with. Her response was to bare all teeth and claws, attacking the United States (really?) as well as me personally. My hope of all hopes is that she somehow sees this broadcast]

Title: Why living kidney donors are not informed about dangerous long term consequences.

Description:
"Young sporty donors declare that after a living kidney donation they do have a lot less physical stamina. One of the donors could no longer perform her job.
Is there a connection between donation and fatigue and less physical stamina?
Leading German transplant surgeons do consider this consequence as unlikely.

REPORT MAINZ has discovered many medical studies give other information. E.g. the medical university Hannover found that 26% of all donors do complain about reduced physical stamina one year after nephrectomy. A unique data collection in Switzerland found a similar outcome.

Although Professor Gilbert Thiel did not ask the donors explicitly for fatigue, 8% of all donors complained about fatigue. Thiel presumes that the estimated number of undetected cases is higher and demands that all living kidney donors need to be informed about this risk.

The two donors who were questioned by REPORT MAINZ assure that they were not informed about this fatigue. Both are filing a suit against the transplant clinics."

LINKS:

http://www.ardmediathek.de/ard/servlet/content/3517136?documentId=7608432

XL-Version: http://www.ardmediathek.de/ard/servlet/content/3517136?documentId=7608318

Content of the XL Version (Just roughly):

"Donor Christiane Geuer, the 32y.o. lady, was extremely fit until 4 years ago physically and mentally.

CG: I was full of energy, played high performance sports. In summertime I was wakeboarding on the lake for hours, I was doing skatemarathons of 140 kilometres, climbing and hiking in the Alps. In wintertime I was snowboarding and was full with energy, sometimes I didn't know what to do with all this energy.

Hospital scene:" 2007, Christiane Geuer donates a kidney to her sick mother. Christiane Geuer insists the doctors had assured her that she could continue her normal life after donation. But in reality she paid a high price for it, professionally and privately. "

CG: "It developed step by step. aA the beginning you think you are tired and everything goes slower because surgery is not so long ago. But after half a year I noticed that something is different now. I needed a lot more sleep, I was tired a lot quicker and as soon as I started working again, it became really tough. I could not speak of professional efficiency."

ATC pic: "Before the donation CG worked as an air traffic controller. A profession that demands highest concentration and does not excuse any mistake. "

CG: "I no longer work as air traffic controller. I tried to do the job again for over two years, but it did not work at all, there was no normal life any more. That was simply nightmarish. It nearly happened that two aircraft had a nearmiss and it became obvious that this was it. That was the clear signal that this job came to an end for me. "

Speaker: "In comparison to pre-donation she describes that she has had a massive impact on her performance. "

CG: "Now, with working only part-time (35%) I maybe have 50% of my former energy. And with sports maybe half of it. "

Speaker: "And the consequences of donation are visible for the mother"

Mother HG: "It is an incredible high price which she (my daughter) has to pay, so that I can feel healthy as never before in my life. "

Speaker: " 2010 nearly 700 people donated a kidney to close relatives in Germany, in most cases there are no complications, but more and more donors complain about a reduced physical stamina after donation.

As this young woman: "The 41year old donor is chonically exhausted, suffers massive concentration problems. One year ago she donated a kidney to her husband. She wants to stay anonymous as she fears losing her job. "

Donor 2: "I was full with energy before donation, I loved to do as much as possible every day and now I became 20 years older within one single day. And it does not improve, energy and performance ability stay low. I am just tired. And this fatigue. if I should compare it to anything, it is as if you hadn't slept for two days in a row. I can remember that I stood in the bakery and did not know how to select 60 cents out of my purse. I forget simple wordings. I work with numbers so it is especially hard for me to work with enough concentration when being so tired."

Speaker/Car in front of clinic:
"What do Germany's leading transplant surgeons say to this accusation? We visited the transplants surgeron congress 2011 in Munich. Professor Jurgen Klempnauer, Medical University Hannoverm has transplanted hundreds of kidneys. And Professor Peter Neuhaus from Charite in Berlin is a international well known transplant surgeon."

Peter Neuhaus: "I would know if there were kidney donors who have less physical stamina or any other disturbance"

Prof. Klempnauer: "That such a fatigue syndrome is being caused by kidney donation is unlikely. "

Question: "And is also the actual state of science?"

Prof Klempnauer: "Yes, this is the actual state of published science"

Speaker: "REALLY? We researched for a couple of months and indeed, the reduced physical stamina is reported in quite a number of studies. For example one study from the medical university Hannover, thus Klempnauers own clinic (!!!), reported that 26% of all donors complain about reduced physical stamina and performance one year after donation.

After confrontation with these facts, Klempnauer admits:"that one quarter of all donors complain that physical stamina and performance is reduced since donation, is alarming. And needs further analysis."

Speaker: "We drive to Switzerland, Basel. We know that for eighteen years there is a unique data collection of all donors in Siwtzerland. The team around Professor Gilbert Thiel asks all donors every two years for their present state of health. That is the only study of its kidney world-wide"

Prof. Thiel: "We send questionaires to all donors about their social status, asking if they suffered any disadvantages after kidney donation. And to my surprise there have been some donors who report that they encounter fatigue since donation. "

Speaker: "Although Prof. Thiel did not ask individually for fatigue, 8% complained about fatigue. And, in medicine, this counts as common. REPORT MAINZ received these results exclusively.

Prof. Thiel: "For me this is surprisingly common. I did not expect this. But I know that these donors were not tired before donation."

Speaker: "Once again: Prof Thiel did not ask for fatige complaints, but still donors complained about fatigue.

Question: So we can assume that there ist still some possibility for a higher estimated number of undetected cases?

Thiel: Yes!

Question speaker: "Is there a need for prospective donors to be informed about this fatigue prior to surgery?

Thiel: Absolutely!!! There is no doubt for me about this!!

Speaker: "Christiane Geuer assures that she has not been informed about these consequences, the fatigue syndrome. The same thing happened to the other donor.
Is this the common practice in Germany? "

Prof. Klempnauer: We do inform about long-term psycho-social restrictions. But we cannot mention every little consequence.

Question: "So fatigue syndrome is not mentioned?"

Prof Klempnauer: "Not as fatigue syndrome as a single complication"

Prof. Neuhaus: I am personally very convinced that there is no connection between donation and these consequences. Therefore I would only frighten the patients and potential donors if I informed them. And I do not deem this right.

Speaker: Christiane Geuer filed a suit against the transplatnation clinic because of wrong informed consent. Also the other donor will file a suit. What does the law say? Prof Schreiber, lawyer, was also responsible for writing the present valid transplantation law.

Prof Schreiber: All risk that might have an impact on the donor and all risks concerning the health status must be included in the informed consent.

Question: If they do not mention all risks to donors, is this a contravention of law?

Prof. Schreiber: This provides the reasons for liability.

Speaker: Since donation, life has changed a lot, basically and existencially.

Donor 2: I am not deluded, my husband will not be able to work full time till old-age pension. So it would have been important that I can work as long as possible. But my job is in danger. I do not know if I can work like this forever because on so many days I feel so awfully bad.

Donor 1, Christiane Geuer: I tire a lot quicker, my stress resistance is a lot less and in sports I can do just tiny parts of what I used to do before. I am more sensitive to anything, my immune system is more prone to diseases and infections. I stay in bed for whole days in order to recharge my batteries. There is a difference like day and night!

Speaker: Christiane Geuer together with her mother. The mother feels good with the kidney, very good.

Conclusion: Kidney donation help very sick patients, but donors need to be fully informed about all the risks involved. And there is a great need for change in Germany.

Couldn't Have Said It Better

2011-06-30T22:18:00.000-04:00

Loyola's Living Donor Ethics - Beyond Epic Fail

2011-06-25T13:16:00.006-04:00

Loyola, home of the "let's convince seven of our employees to kick out kidneys so we can generate lots of press and even more money", has issued the following press release, entitled:

Loyola Kidney Donor Saves Her Own Life by Giving an Organ.

The title alone makes me gag because it's such obvious propaganda, but most of all because it's a Big. Fat. Lie.

It wasn't donating that caused Dorothy Jambrosek to discover her pre-cancerous lesions - it was the EVALUATION. And it's not because the living donor evaluation is such a rigorous thing: regular self-exams, a mammogram, and an OBGYN exam would've turned up the same thing. To give credit to Loyola or to the transplant industry for discovering these lesions is simply bunk.

The treatment for Ms. Jambrosek's lesion was a double-masectomy.

Read that again. A double-masectomy. Not radiation, not chemotherapy, not a lumpectomy - a DOUBLE MASECTOMY. One does not have to be well-versed in breast cancer knowledge to know that one does not undergo a double masectomy unless the situation is of the upmost severity, one's prognosis is critical, and one's cancer is aggressive and expected to spread. This was not a "Let's remove that suspicious mole just be safe" scenario.

One of the transplant industry's major justifications for harvesting the public's kidneys and livers is that living donors are healthy, much healthier the average person. Ms. Jabrosek was clearly not. Yet Loyola put her through a major and unnecessary surgery, and took her kidney anyway. They exposed her to a host of short and (unknown) long-term consequences because her recipient "had been difficult to match" and because "six other people were able to receive kidneys". So who were they prioritizing really - Ms. Jabrosek, seven recipients, or fees for fourteen surgeries?

According to the article the following people participated in this ethical quagmire:

- Constantine Godellas, MD, FACS, director of the Breast Clinical Program and co-director of the multidisciplinary Breast Oncology Center

- LUHS plastic surgeon Victor Cimino, MD, FACS

- LUHS kidney transplant surgeon John Milner, MD

Some types of chemotherapy are nephrotoxic - poisonous to kidneys. What if her cancer returns? Is it inadequately treated, or does she risk kidney failure because she has 50% less renal reserve to withstand noxious substances? Will Godellas, Cimono, and Milner give her one of theirs? Or will they deny culpability?

The situation itself is distasteful, but the fact that Loyola has used it as a PR opportunity is reprehensible. There is nothing to celebrate in exploiting the generosity and good will of Ms. Jabrosek or others like her. That Loyola thinks there their behavior should be flaunted is indicative of exactly how skewed their ethics really are. Shame on them.

Happenings in a Writers and Readers World

2011-06-24T11:12:00.005-04:00

When I'm not doing all this living donor advocacy stuff (and all related thereto), I'm reading and/or writing. So here are a couple of notable articles about such that I ran across today:

Seattle Mystery Bookstore Owner Refuses to Stock Amazon's Mystery Imprint Authors.

For the unitiated, the crux of the conflict is this: Amazon has decided that being a bookseller wasnt enough and has now decided to become a publisher too. Makes sense from their angle - cut out the middleman. Right now, it makes sense for the author too - larger royalty rate, more publicity/marketing than the NY publishers offer. But is it advantageous to the indie bookstore?

Read the article and the comments to get all perspectives.

AOL Hell: An AOL Content Slave Speaks Out.

While this narrative is specific to AOL, understand that this is the nature of many 'content farms' on the internet. Too many folks think that since we all learned how to string words together into something resembling a sentence, anyone can be a writer. Simply not true. I can open my mouth and sing; does that mean I'm Beyonce (or Freddie Mercury)? Writing is a craft; effective communication is a craft. Paying employees a decent wage and treating them with respect should be non-negotiable regardless of the industry.

Why Shands Jacksonville Kidney Transplant Program Closed

2011-06-17T11:04:00.000-04:00

I applaud this reporter for actually doing his job: conducting research, asking hard questions, and telling the truth. The transplant industry is a complicated creature with many heads, and they are all masters at obfuscation and diversion. As an advocate, I appreciate that someone cared enough to bring this story to the public.

http://bit.ly/lGME3Ehttp://www.blogger.com/img/blank.gif

Notable facts:

- the program failed to meet six out of twelve federal standards.

- transplant recipients' three-year survival rates were too low.

- no follow-up on 'adverse events' [note: I adore this phrase btw, it's such an absurd euphemism for "we killed or maimed someone"]

- shoddy record-keeping: eg. half their waitlisted patients were actually ineligible. [note: this is why we should view the alarmist numbers on the waitlist with suspicion]

- and not surprisingly, they lied, lied, lied to the public about their reasons for closing.

How NOT to Market (aka marketing fail)

2011-06-11T14:59:00.000-04:00

Earlier in the week, I received this comment (which also supports why I moderate comments on this blog):

Dear Cristy,

We are huge fans of Living Donor 101 over at [shamless plug]! We’re one of the top 10 online media companies in the US and would love for you to help pilot our new Health & Wellness Community at [another shameless plug], slated to launch in the coming weeks.

If you’re interested, please contact me about joining our community for the launch!

Cheers,

Sxxxx Hxxxxxx
Community Partners Editor
[company with no shame]
sxxxxx@shamelessplugging.com

And just yesterday this email arrived:

Hello,

The name is [probably fake name redacted], I’m a professional writer and webmaster; a pleasure to e-meet you! I’ve been reading your blog lately at the office and I’m loving it so far, plus I was quite impressed with the design of your site; it’s so nicely customized that it just stands out.

I’m contacting you because I have a few ideas for an article that, in my opinion, would be very fitting for your readers.

The format of the article would be as follows:

Length: >= 400-600 words.

Delivery: Formatted HTML file with pictures and relevant supplementary resources, ready for publishing.

Copyrights: 100% original and not published anywhere else; the article will be for the exclusive use of your blog.

Would it be fine if the article body contained one, entirely relevant link to my website, which would add even more value to the article?

I really love to write, so I’m absolutely ready to prepare the article for you and send it for your approval within the next few days; I’m sure you will like it and we’ll get it to work, but should you decide not to publish I will just stash it in my private collection for later use – no harm done!

Let me know if this is something you would be interested in.

Kind regards,
[fake name redacted]

The first example is blatant, the second less so. The first I siphoned into my 'spam' folder; the second I replied with this:

[fake name redacted],

Unfortunately your email pitch comes across as entirely canned and
formulated. There is nothing in your message to indicate you've read a
single word on the website, or have any understanding of the purpose of
our organization. In fact, you don't even identify the topic of your
'guest post' or its intent.

In the future, I suggest at least attempting to personalize your blatant
attempts at marketing.

Not included in my response but still true -> A real professional would use something a bit more substantial than a gmail account (Full disclosure: I have a couple; but my 'business' emails don't originate from there)

A little living donor cross-promotion

2011-06-10T10:34:00.004-04:00

Living Donors Matter, inc has a Facebook page. A "like" will keep you updated on LDM's progree, and help spread the modest advertisement throughout the Facebook community. The more living donors (and living donor allies) we can organize, the more people we can educate, help and protect.

Article on Paying for Kidneys - Right on Time

2011-06-07T22:24:00.003-04:00

I can't be blamed. My prior post is dated June 3 and this article appeared two days later.

From the Denver Post: Long Waits for Organ Transplants Have More Pondering Payments to Donors.

Clearly I don't have to explain my opinion on this topic, but I thought I'd share a couple precious nuggets from this little piece.

"It's time to loosen these restrictions in order to save lives," said Dr. Arthur Matas, a leading transplant surgeon in Minnesota and advocate of an organ compensation system. Such arrangements are illegal under federal law.

University of Minnesota, where Matas is a surgeon, is also the origin of the oft-misquoted and highly flawed study "Long Term Consequences of Kidney Donors". The authors (Matas included) sent self-reports to U of Minn's LKDs, 40% of which declined to participate, then conducted physical exams on 255 of their LKDs (out of 3700, a mere 6.9%), yet sent press releases far and wide proclaiming that living kidney donors suffer no ill long-term effects nor a shortened lifespan. Unfortunately, media types have so far failed to look beyond the marketing spin.

U of Minnesota is also the new contractor for SRTR, the Scientific Registry of Transplant Recipients, who keeps and analyzes national transplant-related data. What will their surgeons' attitude mean for neutrality and federal policy recommendations?

Frustration with the lists, and growing reports of wealthy Americans buying kidneys from poor overseas donors, has risen to an ethical turning point for doctors like Igal Kam, chief of University of Colorado Hospital's transplant surgery.

Kam supports compensation and hopes enough medical professionals will sign on to give the idea momentum for the necessary act of Congress.

"It's our job to maximize donors," Kam said. "So we as a society need to look at how to create compensation for the donor families."

It's good to know U of Colorado surgeons believe their job is to obtain organs for recipients, the health and protection of living donors be damned. Of course, this is same facility where liver donor Ryan Arnold died last August so I suppose I shouldn't be too surprised.

There was one small bright spot in an otherwise very skewed article. Danovitch, whom I quoted in my last post, had this to say:

People willing to buy and sell organs are much more likely to lie about their health and have infections or other problems, Danovitch said. As for the proposed list of "incentives," he said, "Do you want to live in a country where a poor person who wants health insurance has to give up a kidney?"

Kidney Markets - Epic Fail

2011-06-03T11:51:00.001-04:00

An article popped up on my google alerts recently regarding an Indian (dot, not feathers as Robin Williams' character would say in "Good Will Hunting") who answered a solicitation for a kidney, sold said kidney and has now been screwed and abandoned by his recipient/buyer.

A couple of days later, another article appeared, this one about a seventeen year old Chinese boy sold his kidney to a black market broker so he could afford to buy an ipad 2. As per the first story, once the kidney was safely in the hands (er, body) of the recipient, the broker has disappeared - with the payment.

Other than one being governmentally sanctioned and the other not, these are incredibly similar tales. Both illustrate the dangers of commodifying a living person's body, as well as the dehumanization of living organ donors*. They also reveal how organ sales take advantage of the disadvantaged, vulnerable and desperate, regardless of legal status.

Some folks would dismiss these two experiences as anecdotal, extreme examples, or emotionally inflammatory. Except that they confirm what all published studies on organ sales have concluded:

Selling living donor organs benefits everyone (surgeon, transplant program, recipient, broker, govt) except for the living donor her/himself.

Naqui compared kidney vendors and kidney donors in Pakistan:

Of the vendors 67% were bonded laborers earning less than %50 month as compared to controls where 68% were skilled laborers and self-employed earning greater than $100 month. History of vendors revealed jaundice in 8%, stone disease in 2% and urinary tract symptoms in 4.8%.

Postnephrectomy ﬁndings between vendors versus donors showed higher BMI and almost twice the level of hypertension in vendors, serum creatinine (mg/dL) of 1.17±0.21 versus 1.02 ± 0.27, an almost 20 point lower GFR (kidney function) in vendors, urine protein/creatinine of 0.150 ± 0.109 versus 0.10 ± 0.10, hepatitis C positivity in 27% versus 1.0% and hepatitis B positive 5.7% versus 0.5% (p = 0.04), respectively.

In conclusion, vendors had compromised renal function suggesting inferior selection and high risk for developing chronic kidney disease in long term.

Danovitch had this to say about Naqvi's study:

The study adds an important element to the growing body of empirical evidence not only from Pakistan but also from Egypt, India, Iran and the Philippines (2–4) suggesting that the outcome for kidney donors who sold their organ is worse that that of those who donated it without ﬁnancial gain. Worse, not only from a strictly medical point of view, as Rizvi et al. have shown, but also from a psychosocial one.

The donation transaction is primarily a commercial one and the donor likely does not have the beneﬁt of a trustworthy advocate to care about his or her interests. Neither is there good reason for the donor and the recipient to care much about each others welfare since there is no mutual interest in a good outcome.

And even if we were to accept the dubious ethical and practical arguments in favor of commercialization we would be left with the complexities and uncertainties of ‘regulating’ a system which would undoubtedly engender a destructive schism in the professional transplant community; a drop in noncommercial living donation; and possibly also of deceased donation. Commercial and noncommercial organ donation do not cohabit well together.

Goyal, after interviewing kidney vendors in India (refer to first news article at the top of this post):

Sixty percent of female participants and 95% of male participants worked as laborers or street vendors.

Ninety-six percent of participants sold their kidneys to pay off debts. The average amount received was $1070. Both middlemen and clinics promised on average about one third more than they actually paid. Most of the money received was spent on debts (60%), food and clothing (22%), or marriage (5%).

Average family income declined by one third after nephrectomy. The percentage of participants below the poverty line increased from 54% to 71%. Of the 292 participants who sold a kidney to pay off debts, 216 (74%) still had debts at the time of the survey.

About 86% of participants reported a deterioration in their health status after nephrectomy.

Seventy-nine percent would not recommend that others sell a kidney.

Broumand said, of the Iran experience of creating a legal kidney market, which has eliminated Iran's waiting list:

...we have paid an expensive price for ﬁrst reversing the percentage of LRD [living related donation] in favour of LNRD [living non-related donation]. Because of the rush for donation of kidneys there are occasions in which HIV, HBsAg [Hepatitis B], HCV [Hepatitis C], CMV [cytomegalovirus, one of the herpes family], and tuberculosis are donated with the kidneys...I personally have observed two patients expiring within the ﬁrst 3 months of kidney transplantations with miliary tuberculosis (TB).

I personally interviewed 32 donors in our Department. Of these 32, just one person claimed that he wanted to donate a kidney with true altruism. It was shocking when a husband, just discharged from the hospital after donating his kidney, brought his wife to donate her kidney as well because the payment for his kidney was not enough for them to repay their debts. Another person wanted to sell his kidney to be able to buy drugs, and asked if he could sell both of his kidneys and start on maintenance dialysis, as dialysis anyhow was free...sadly, because donors are in a hurry to ﬁnish the business, there is no time to check if they are really mentally competent or not. I had a case in which the donor killed the recipient’s son during the course of work-up when he understood he could not donate the kidney.

Finally, as these paid donors are too involved to think about the future, almost 95% of them receive no follow-up visits after donation.

And finally, Zargooshi who spoke with hundreds of Iranian kidney vendors:

Poverty prevented 79% of vendors from attending followup visits, and vending caused negative effects on employment in 65%. Of the families 68% strongly disagreed with vending, which caused rejection of 43% and increased marital conflicts in 73% of vendors, including 21% who divorced.

There were 70% of vendors isolated from society, and 71% had severe de novo postoperative depression and 60% anxiety. Vending caused somewhat (20%) to very (66%) negative financial effects.

It also had negative effects on the physical abilities in 60% of vendors who were mainly unskilled laborers, and 80% were dissatisfied with postoperative physical stamina, which was decreased mostly by depression.

Of the vendors 37% concealed the truth of kidney sale from anyone, 14% disclosed it only to spouses, 43% to first generation relatives and 94% were unwilling to be known as donors.

The mental preoccupation with kidney loss was usually (30%) to always (57%) present and interfered negatively with vendor life, and 62% reported negative effects on sense of being useful. Effects on general health were somewhat (22%) to very (58%) negative. When thinking about vending, the majority cited negative feelings.

They responded that if they had another chance 85% would definitely not vend again, and 76% strongly discouraged potential vendors from “repeating their error.” Half the vendors were ready to lose greater than 10 years of life and 76% to 100% of properties to regain kidneys.

Consider all of this when some individual or organization proposes a government sanctioned living organ (usually kidney) market. It might be beneficial (financially and otherwise) for some, but it's always a losing proposition for the person relinquishing the kidney.

*A lengthy discussion could be had regarding which aspect arrives first, but we'll leave that for later.

Broumand, B. (1997). Living donors: the Iran experience Nephrology Dialysis Transplantation DOI: 10.1093/ndt/12.9.1830

Naqvi, S. A. A. (2008). Health Status and Renal Function Evaluation of Kidney Vendors: A Report from Pakistan. American Journal of Transplantation DOI: 10.1111/j.1600-6143.2008.02265.x

Danovitch, G. M. (2008). Who Cares A Lesson from Pakistan on the Health of Living Donors American Journal of Transplantation DOI: 10.1111/j.1600-6143.2008.02290.x

Goyal, M. (2003). Consequences of Selling a Kidney in India. JAMA: The Journal of the American Medical Association DOI: 10.1001/jama.289.6.699-a

Zargooshi J (2001). Quality of life of Iranian kidney "donors". The Journal of urology, 166 (5), 1790-9 PMID: 11586226

More Info on UPMC living donor transplant programs

2011-05-29T16:21:00.014-04:00

With the news that a surgeon and a nurse have been suspended over the infected living donor kidney episode, and that UPMC has temporarily halted both their living kidney and living liver transplant programs, I thought this might be a good time to pull up some 'official' data*.

[forgive the formatting; blogger was not cooperating]

Kidney transplants:

.......... 2010 ... 2009 ... 2008 ... 2007 ... 2006 ... 2005
Living .... 62 ..... 73 ..... 55 ..... 69 ..... 80 ..... 77
Deceased .. 90 ..... 94 ..... 109 .... 97 ..... 215 .... 133

Liver transplants:

.......... 2010 ... 2009 ... 2008 ... 2007 ... 2006 ... 2005
Living .... 17 ..... 13 ...... 4 ..... 19 ..... 36 .... 36
Deceased .. 108 ... 113 .... 102 .... 164 .... 147 .... 186

So how does this compare to other US transplant centers?

Johns Hopkins:

Kidney:
......... 2010 ... 2009 ... 2008
Living ....92 ... 97 ... 88
Deceased ..115 ... 154 ... 78

Liver:
........... 2010 ... 2009 .... 2008
Living ..... 1 ...... 0 ....... 3
Deceased ... 38 ..... 64 ....... 57

Lahey Medical Center:

Kidney:
.......... 2010 ... 2009 ... 2008
Living .... 20 .... 14 ...... 20
Deceased .. 22 .... 18 ...... 19

Liver:
........... 2010 ... 2009 ... 2008
Living ..... 19 .... 24 ...... 27
Deceased ... 37 .... 35 ...... 23

UCLA Medical Center:

Kidney:
......... 2010 ... 2009 ...2008
Living ... 138 ... 140 ... 131
Deceased ..166 ... 137 ... 169

Liver:
......... 2010 .. 2009 .. 2008
Living .... 1 ..... 3 ..... 2
Deceased . 195 ... 189 ... 226

*this data is public knowledge from the OPTN site. I encourage everyone to go over there and browse around awhile.

In Case You Missed It...

2011-05-26T13:39:00.002-04:00

Over in the right column, under "Hit These Sites" you'll see the new addition of Living Donors Matter, Inc. The link takes you directly to the online form where you can share your living donor experience. LDM is the only organization dedicated solely to the protection, care and advocacy of living organ donors. Their goal is to file with the IRS for a nonprofit exemption by the end of 2011, but that can only be possible with your help.

If you'd like to volunteer or be involved with LDM, inc. contac them at info [at] livingdonorsmatter.com. Sign up for their email list too.

Pass it on :-)

Advocacy, Risk and Courage

2011-05-24T20:32:00.005-04:00

Last night I was flipping channels and ran across this heart-breaking story on Rachel Maddow. In short, Jeff and Lori Wilfahrt of Rosemont, Minnesota lost their openly gay son this year in Afghanistan. Recently, Mr. Wilfahrt testified in front of Minnesota's senate as they consider a constitutional amendment banning gay marriage. He tailored his message to veterans' groups, to people who had 'taken an oath to protect the Constitution', because he knew the Senators weren't listening.

While I encourage you to click the link and watch the entire interview, here's an excerpt:

As it turns out, that really got me nothing. I have had little or no response from the veterans societies of the state of Minnesota, at least so far. If I said something to offend them, I apologize.

I sat in my chair in my living room and said - out loud - to these incredibly devastated people on my television:

You said nothing wrong. These people are simply cowards.

Pretty strong language, I admit, but recent events in my own life have shown this to be true far more often than I'm comfortable with. Sure, people have reasons for staying silent or hiding behind their computer screens, but the truth is, real change requires risk and confrontation.

Where would we be if:

- The signers of the Declaration of Independence had remained anonymous
- If Alice Paul hadn't protested, been imprisoned, and commenced a hunger strike
- If Martin Luther King Jr. hadn't gone to Alabama?

Or how about the countless corporate, government or citizen whistleblowers: Woodward and Bernstein, Jeffrey Wigand (tobacco), Coleen Rowley (FBI's slow action pre-9/11)...

I've been wrestling with these issues over the past couple of weeks, questioning if I'm the one out of line, if my expecations were too high. Then today, The Hastings Center bioethics forum published this essay by Dr. Alice Dreger, entitled "On Naming Names".

Again, I encourage each of you to read it in its entirety (cuz it's a wonder), but here are my favorite bits:

But real accountability requires real names.

And...

It’s also really hard to appropriately laud those who did the right thing without naming the names of those who didn’t along with those who did.

Finally...

As long as Society was to blame, no one was to blame. And no one had to change the status quo, because no one could change Society. Once I forced my students to start naming who exactly thinks or says this or that, their whole view of the world changed. Suddenly they realized who was responsible for promoting this (mis)representation or that ugly norm. And they realized you just had to change the behaviors of those people. Suddenly my students had power. The giant named Society had magically shrunk; the short guy with the slingshot had magically grown.

Perhaps it is that sudden resolution of the vision of power that scares us in the naming of names. So long as we do not name names, we can just take our paychecks and fade into the big picture with the rest of Society. We are not obligated to see who is doing what, and so we are not obligated to see who we are. We are not obligated to try to be big.

As evidenced by the Wilfarht's, our country is currently divided into bullies and cowards, and the bullies are surely winning. We are obligated to try and be big.

Alabama Reporter Consults Wrong Living Donor "Expert"

2011-05-20T10:52:00.001-04:00

Last month I ran across an article about a would-be recipient (who had already burned through two living kidney transplant) who was looking for a third. Not surprisingly (to me, anyway), the reporter got it wrong. So I sent her an email.

April 20, 2011
lisa.singleton-rickman@TimesDaily.com

Ms. Singleton-Rickman

I was recently forwarded the story you wrote on Jeff Malone's search for a living kidney donor, and would like to comment on a few of its details.

1. Ms. Rich of the Alabama Kidney Foundation stated that a living donor 'goes to the top of the list' if s/he ever needs an organ. This is patently false. OPTN established a 'four-point' priority for living donors as defined in 3.5.11.6 of OPTN's policies, found here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf This policy only refers to local allocation and not national allocation, as do the priorities for pediatric patients and 6/6 antigen matched organs. It does NOT move a living donor to the 'top' of the list, but theoretically, can shorten wait time.

2. Ms. Rich also said that being a living donor 'doesn't cost a penny'. Again, she is incorrect. A recipient's insurance is obligated to pay for evaluation, surgery and follow-up. However, it does not pay for travel, food, lodging, lost wages, child care or other expenses. There have been repeated incidents of a recipient's insurance policy refusing to pay for a living donor's complications, and it most certainly does not cover any mental health treatment required because of a living donor's depression or PTSD.

3. While I'm glad that Jackie Whatley has remained healthy since her donation thirteen years ago, her experience is not generalizable to the entire living donor population. According to OPTN, 4.4 living kidney donors die each year in the US within 12 months of surgery. Many more experience debilitating complications: nerve damage, pancreatitis, chylous ascites, intestinal blockage, testicular swelling and sensitivity, adrenal dysfunction and more. As already stated, 20-30% experience depression, anxiety, anger and PTSD yet not a single transplant center offers support or aftercare services.

There is NO long-term data on living donors' health and well-being. No one bothered to collect social security numbers until 1994 and there are no quality controls to know if they are correct. OPTN's own living donor data task force in 2009 concluded that OPTN data was unreliable and invalid six-weeks post-donation. Only because of this four-point priority do we know that any prior living kidney donors have registered on the wait list in need of their own transplant. Unfortunately, not all LKDs know of this priority so the current statistic is not all inclusive. Studies conducted on LKDs with end-stage renal disease indicate its onset at approximately 20 years post-donation. In addition, even a 10% reduction in kidney function means a higher lifetime risk of hypertension, cardiac disease and death. A recent study found 55% of LKDs with hypertension a median 14 years post-donation, and another concluded that the loss of kidney translated into a 25% greater risk of cardiac death.

I am not unsympathetic to Mr. Malone's situation, but if members of the media such as yourself are going to continue writing about living donation, it's imperative to ascertain the facts so as to not mislead the public.

I couldn't find Marty Rich's contact info on the Alabama Kidney Foundation's website so I sent an email to Mr. Rich Jackson, the executive director.

April 20. 2011
jack@alkidney.org

Mr. Jackson,

My attention was recently drawn to a Times Daily article regarding Jeff Malone's search for a donor kidney, his third. In this article, Ms. Marty Rich, identified as the 'head' of the Shoals Chapter of the Alabama Kidney Foundation, is quoted as saying, "It [the donation] doesn't cost the donor a penny." She is completely incorrect. A recipient's insurance is obligated to pay for evaluation, surgery and follow-up. However, it does not pay for travel, food, lodging, lost wages, child care or other expenses. There have been repeated incidents of a recipient's insurance policy refusing to pay for a living donor's complications entirely, over a certain amount, or only within a certain time frame. They most certainly do not cover any mental health treatment required because of a living donor's depression or PTSD, which affects 20-30% of all living organ donors.

Ms. Rich also stated that a living donor 'goes to the top of the list' if s/he ever needs an organ. This is patently false. OPTN established a 'four-point' priority for living donors as defined in 3.5.11.6 of OPTN's policies, found here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf This policy only refers to local allocation and not national allocation, as do the priorities for pediatric patients and 6/6 antigen matched organs. It does NOT move a living donor to the 'top' of the list, but theoretically, can shorten wait time. How much is determined by the region where the living donor is registered.

If representatives of your organization are to be quoted in the media, it's important they be given the facts. Misleading statements will only erode the public's trust in the transplant system and cause organ donation to further decline. I would've contacted Ms. Rich directly with these comments, but her information is not available on your website.

I trust you will correct these misconceptions with Ms. Rich and Ms. Singleton-Rickman at the Daily Times as soon as possible.

I'm posting both these missives now because neither bothered to even acknowledge my existence. So much for journalistic and organizational integrity.

Proof That Some Kidney Donor Deaths Are Completely Preventable

2011-05-18T23:32:00.006-04:00

I tweeted this article when it was first printed a couple of days ago, but I wanted to make a few comments about it here.

In short, a number of living kidney donors have died since 2005 because surgeons used a blood vessel clip they knew was prone to failure. So prone to failure that the FDA issued a temporary ban on the clip in 2006.

Oh and by the way, there have also been "several" other cases where living kidney donors have suffered major hemorrhages because of this damned clip too.

Living kidney donors endure a needless medical procedure, relinquish a major organ then spend their lives in a permanently compromised state all because they want to help another person (and that's if things go well. there's always the possibility of major complications, psychosocial problems and financial drains). Yet the transplant surgeons can't care enough to heed data and federal notices that say, "Hey, don't use this clip on a living donor nephrectomy because you cut the renal stump too short. This causes clip failure, resulting in major bleeding and death".

They do this why - because clips are cheaper; because their personal opinion is that it's not dangerous because they've never killed anyone (yet)? The arrogance and lack of empathy is infuriating.

And the article climaxes on one of my favorite transplant industry-related pet peeves: the hording/hiding of information by UNOS/OPTN, CMS (medicare) and the FDA on deaths and complications.

Dr. Friedman contended that these regulatory agencies have balked at releasing case details out of medicolegal concerns about discoverability and confidentiality.

"discoverability" = it's more important to help the hospitals, transplant programs and surgeons to cover their asses from a much-deserved lawsuit than it is to protect the public.

And folks wonder why I'm so angry.

ETA: May 2011 FDA and HRSA warning on the use of these clips on living kidney donors.

Disease Transmission in Organ Transplantation

2011-05-15T18:22:00.005-04:00

With the news that UPMC has temporarily halted their living kidney donor program due to hepatitis transmission to a recipient, I thought I'd pull some OPTN data for my fair readers' perusal.

These slides are from OPTN's 2011 spring presentation. (click to enlarge, just be prepared to hit your back button)

The Disease Transmission Advisory Committee classifies these cases into four categories:

Proven: disease in donor and at least one recipient (think deceased donor)
Probable: disease in one or more recipients with suggestive data about donor.
Possible: evidence to suggest but not proven transmission
Intervention Without Documented Transmission: no transmission occurred most likely because antimicrobals were used.
Unlikely: limited evidence to suggest transmission could have occurred but no transmission documented.

2006-2010 (only through October 2010) Proven and Probably transmissions:

5 events involving blood borne pathogens (HIV, HBV, HCV)
7 events involving other viruses
24 events involving bacteria
11 events involving fungi
7 events involving 'other' transmissions
30 events involving malignancy (cancer)

This committee has issued 'guidance' documents to transplant centers to reduce/eliminate disease transmission and collaborated with OPTN's Living Donor Committee to improve screening of prospective living donors. While this is obviously a good and necessary thing, the motivation is not quite so crystalline. After all, it's not as if this increased testing arose out of a need/want to protect and care for living donors. No, the sole concern, as always, is for the recipient.

Could Kidney Graft Survival Be Genetics (in part)?

2011-05-12T10:23:00.001-04:00

A study recently published in the American Journal of Transplantion reveals that kidneys from donors with two APOL1 genes (one from each parent) had significantly shorter graft survival than kidneys from donors with one copy of the gene, or none at all.

APOL1 is a gene usually found in African-Americans and is strongly associated with nephropathy (kidney disease). If this result can be duplicated and confirmed, testing for this gene could reduce the risks to potential living donors as well as improve quality transplants for recipients.

Press Release about aforementioned study.

The Perils of Public Information

2011-05-11T02:21:00.003-04:00

A comment was made on my post regarding Tim Wilson's obituary. I couldn't approve the comment because it contained identifiers that I had no way of editing, but I did want to address it here. (And yes, I'm breaking my own rule of addressing anonymous comments, but since it's my blog, I'm allowed)

The comment was as follows:

I can't find your email address to write personally, but as a friend of this family I am asking you to remove this posted obituary. This family has suffered greatly at the lost of both [redacted] and now Tim, and will be very upset if they google Tim (as I did) to find this.

Obituaries, by their nature, are public announcements of a person's death. The key word here being 'public'. Before the internet, a person had limited access to print publications, and generally only through the public library. Now, however, newspapers are online. Which means that obituaries are online (notice the link to the obit in the original post).

Tim's family wrote the obituary and submitted it to the newspaper(s) in which it appeared. I simply repeated the text, adding a title and sentence of explanation so my readers would understand I wasn't posting a random person's obit for no reason.

While I have nothing but sympathy for the family and friends affected by this preventable tragedy, repeating this obituary is nothing but the proliferation of publicly available information. If the friends of the family are upset by the appearance of the obituary, they perhaps should discuss it with the people who composed it (who are not me), or the paper who originally printed it (also not me).

Lastly, glance to the right ----->

In the sidebar, three different websites are listed under the heading "Find Me At...", each of which contain multiple email addresses. One simple click on any of those sites would've revealed active and current contact information.

UPMC suspends adult living kidney donor transplant program

2011-05-10T10:38:00.003-04:00

http://www.pittsburghlive.com/x/pittsburghtrib/lifestyles/health/s_736223.html#ixzz1LvDjT8oD

Seeing a pattern?

See my prior post: brothers-sue-upmc-over-informed-consent

Pittsburgh-Tribune Review's "UPMC study may reshape liver transplant standards" from 2008.

Liver Donor's Death Followed by His Recipient's

2011-05-07T16:23:00.005-04:00

Last year, two living liver donors died: the Arnold case in Colorado and another at Lahey Clinic in Boston. Less than one year later, the recipient has died as well. This is the obituary that ran in the Boston newspapers:

Timothy Paul Wilson, age 58, of Pelham, NH, passed away on the morning of May 2, 2011. He was born in St. Petersburg, FL on November 20, 1952.

Tim was a loving husband, papa, son, brother, uncle, nephew and cousin. He grew up in Odessa, FL and also spent many great times with his parents, Charlie Bob and Donna, in the mountains and rivers of Tate City, GA.

Tim is survived by his wife Susan, daughter Stephanie Stamp, son-in-law Jay, and granddaughters Cameryn and Mallory. He is also survived by his brothers, Charlie and Bobby Wilson, and sister Kathy Holzinger, sister-in-laws and brother-in-laws, numerous neices, nephews, aunts, uncles, including Uncle Don Wilson, and many dear cousins.

Tim was predeceased by his loving brother-in-law, who died on the operating table while donating part of his liver to extend Tim's life.

Tim enjoyed a long and successful career at Raytheon and he took great pride in his work. Tim was an excellent water skier and enjoyed playing on local softball teams for many years.

He will be missed each and every day by his wife, Susan, his family, friends and colleagues. He was a gentle and kind man, loved by all who knew him.

A memorial for Tim will be held at a later date; those wishing to make a donation in Tim's name may do so to the Pelham NH Food Pantry, 12 Main Street, Pelham NH 03076.

2000-2010 Transplant Wait List Stats: Why the Duplicity?

2011-04-25T10:57:00.010-04:00

It seems that all media coverage regarding organ transplants emphasizes the number of folks on the waitlist, and the so-called growing organ shortage. So I thought sharing some of the slides from OPTN's recent presentation at the spring region meetings might be illustrative. (click on the slides to make them larger; just remeber to hit your back button to return to the blog)

FYI: kidneys compromise approximately 3/4 of the waitlist.

I talk a lot about 'actives' versus 'inactives' on the waitlist and how the inactives bloat the true number of folks in need of an organ. Here's some evidence to prove my point. Remember: inactives aren't eligible for a transplant even if an organ becomes available.

Also: candidates are individual people; registrations include all the duplicats. Think Steve Jobs. The official waitlist count repeated everywhere is registrations, not candidates.

I could pontificate on how OPTN should be more transparent with the public about the real need in this country for organs, but I'm certain I've done that elsewhere. In fact, so have other, high profile members of the media (Rob Stein), but last fall, OPTN decided to keep the status quo.

Because it works for them. It garners public sympathy, and helps the transplant centers persuade would-be recipients to find themselves a living donor. Who cares about death by geography, or the lifetime of health risks a living donor assumes? It's not like the surgeons have to live with the consequences of either one, right?

Living Kidney Donors and Hypertension

2011-04-18T17:14:00.004-04:00

I ran into a research abstract this morning (no, I didn't dig up the entire article; I can make my point without it), just published this month.

It says that of 573 living kidney donors who donated between 1965 and 2005, mean age of 47 (+/- 11 years) at donation, and mean time of 14 years since donation (+/- 9 years), 23% were on hypertensive medication. Another 22% had undiagnosed hypertension.

Approximately 14 years post-donation and 55% of living kidney donors in this study had hypertension.

Random Foster Greyhound Photo

2011-04-11T14:03:00.002-04:00

Still up to my neck in wordpress and webdesign, but here's a great photo of my ex-foster dog Mimi.

She just has this expression of "What?"

FYI...

2011-03-29T15:01:00.002-04:00

If I disappear, it's because I'm immersed in the beauty that is Wordpress. I'll be moving this blog over to the LD101 site in the near future, and I'll be setting up a website for the newly incorporated Living Donors Matter, Inc.

Stay tuned - good stuff ahead.

Guest Blogger on that Proposed Kidney Allocation Policy

2011-03-28T14:47:00.004-04:00

Ms. Zill sent me a copy of the missive she submitted to UNOS and asked if I could publish it here:

Attention: Kidney Transplant Committee Liaison
United Network for Organ Sharing
700 N 4th Street
Richmond, VA 23219

Re: Concepts in Kidney Allocation

March 27, 2011

I thank the Kidney Transplantation Committee for the opportunity to comment on, “Concepts in Kidney Allocation.” I would like to focus on provisions made for prior donors who progress to kidney failure.

Mr. Ron Herrick, the first living kidney donor, died in December of 2010 while on dialysis. Prior to this he had suffered from cardiovascular disease for over a decade. This news is alarming because of what it may portend for aging kidney donors.

Although transplantation is often described as miracle for the recipient, rarely is it mentioned, even to kidney donors, that:

“Every kidney donor will experience a decrease in the kidney function compared to pre- donation. The amount will depend upon the potential donor’s age and history. The anticipated change in their individual kidney function is to be discussed with each donor…potential for organ failure and the need for a future organ transplant for the donor…potential for other medical complications including long-term complications currently unforeseen.” (OPTN Guidance Document for the Informed Consent of Living Donors, 2009”)

Instead, there is a common misconception that the remaining kidney grows to do the work of two, which is perpetuated by transplant professionals and is often restated in the media. There is also the understanding among many living donors and their recipients, that if a prior living organ donor progresses to kidney failure, they will be given priority on the national wait list.

Many kidney donors have renal insufficiency, which is compounded by normal age related decline in renal function. Reduced renal mass does increase risk for ESRD. When life is donated, it means that to some degree, risk is shared.

In 2008 a Living Donor Data Task Force (LDDTF) of OPTN found that the data reported by transplant centers are incomplete and cannot be used for research or to make conclusions about the long-term safety of living organ donation. Recently completed studies from sources other than OPTN data are limited due to short duration of follow up and selection bias in transplant centers studied. Peer reviewed articles that cite OPTN data have used non-representative data sets. And, the mounting body of literature about superior survival with nephron sparing surgery in cases of incarcerated renal cell carcinoma is directly relevant to living kidney donors.

While it is true that many donors have positive experiences, there is an ethical concern about the scientific information used to obtain informed consent because long-term risk remains undefined and/or not quantified, and therefore, are not yet remediated. Ethical concerns also exist because the national transplant system lacks preparedness to manage adverse outcomes in prior living organ donors.

The Guidance for the Medical Evaluation of Living Kidney Donors and Guidance for the Informed Consent of Living Donors, developed by the Living Donor Committee between 2007-2009, are only model documents to be used in a voluntary fashion by centers. Kidney donors are entering a national system with clear variation in practice standards across centers, but many are unaware of this. There is a belief among recipients and donors that practice regarding living organ donors is standardized, including how they will be managed on the wait list if they have kidney failure. I believed this when I donated in 1991. My recipient told me the Medicaid manual instructed him to find a living donor. I believed that there was a system in place to take care of me if I progressed to organ failure, and that I would be given some priority on the national wait list.

Despite the altruism of living organ donors and the belief among them that they will receive some priority on the national wait list if they progress to organ failure, it appears that the concept under consideration will actually adversely impact donors who develop organ failure.

For living donors, time from donation–age increases risk for ESRD. Centers routinely accept middle age donors and older, but the remaining kidney of older donors do not hyper filter as well as those of younger donors. The conceptual changes under consideration disadvantage candidates who are older exactly when prior donors are most vulnerable. It also does not address the reality that the normal lifespan of a prior donor with organ failure has been adversely impacted by the donation. This seems unfair, and adds another variable to this fragile and difficult calculus.

The conceptual changes under consideration do not incorporate prior donors into a national ranking for an organ in order to meaningfully prioritize them. It fails to make provisions for the current expectation that living donors will be given national priority based upon wait time.

In this way it leaves them exceptionally vulnerable to geographic variability in organ availability; it is akin to a broken promise to prior donors and their recipients, betrays their trust in the transplant community, and does not enhance the public’s perception of the nation’s system of transplantation.

Consequently, the concepts under consideration lack institutional fairness to living donors who have put their faith in this system, even though their families’, careers, retirement plans, and dreams depend upon the integrity of the transplant system.

The actual number of former donors needing a transplant is irrelevant in the design of a new allocation system. It is the ethical obligation to care for donors who have placed their trust in a system that is paramount. This is especially critical because their informed consent has not been based upon representative data.

Also, as currently conceptualized, these changes will unnecessarily complicate and obscure national data on long-term donor outcomes because prior donors in need of a transplant will be assigned as a local concern, rather than a national concern.

We need national data on living organ donors and a consistent national approach to manage living organ donors. Kidney paired donation will take donors to all parts of the country, will expose them to wide variation in center practice, leave them vulnerable to the vagaries of their recipient’s health insurance plan, and leave them without a consistent plan for follow-up.

And, although the Kidney Committee has learned, “that most stakeholders desire an allocation system that is straightforward and easy to understand,” the management of prior living organ donors listed for transplant within, “Concepts for Kidney Allocation,” is not easy to understand.

Future conceptual changes in the allocation system that utilize a model trajectory of prior donors who progress to organ failure would be an interesting contribution to policy creation about living organ donors. This would also lend some needed transparency regarding the care of living donors.

Currently, OPTN policy developments regarding living donors are inconsistent and haphazard. For example, there is an OPTN policy proposal about data collection of living organ donors currently posted for public comment. This policy would require the center that conducts the donation surgery to also facilitate data collection for two years. It is described as a strategy to enhance continuity of medical care (which is desperately needed for kidney donors) and to increase center accountability for donor outcomes. But, remarkably, it does not create provisions for continued medical care, only data collection. For those who donate at centers away from their home, as will many who participate in kidney paired donation, there may not be local, medical follow-up.

And, after two years, the donor will be lost to follow-up unless they progress to organ failure. So, although the proposal on data collection recognizes the need for donor data, need for continuity of care, and emphasizes center accountability for donors, the changes under consideration in the allocation policy do not address continuity of care for prior donors with organ failure, would obscure a national accounting of living organ donors in need of a transplant, does not hold centers accountable to their donors with organ failure (but leave them to local DSAs), and is counterproductive to the need for national transparency about living organ donor outcomes.

Human beings are not medical supplies. The public cannot be asked to consider living organ donation in a national system that does not optimally manage their care, especially in the acknowledged, but not yet quantified, contingency of organ failure. The miracle of transplantation and the need for donor organs are not justifications to marginalize former donors in need of a transplant.

Donor altruism, “good faith” in the promotion of living organ donation as a safe procedure, and commitment to public safety require careful consideration of the needs of prior donors within a national system to allocate deceased donor organs. A more detailed explanation of the management of prior living organ donors in need of a transplant is needed, which reflects care and respect for the approximately 100,000 living kidney donors that have enhanced lives and contributed to the enterprise of transplantation.

And, although the Kidney Committee has undertaken a herculean task to address shortcomings in the current system of allocation of deceased donor organs, it leaves many dissatisfied. This may be so because the concepts under consideration primarily address characteristics of the candidate and donor populations, which create the appearance to the public that needed technical and system changes are underappreciated or not recognized. This does not reflect positively on the practice of transplantation in this country. Perhaps these proposed concepts would be less controversial if they included conceptual changes within OPO and center practice to improve the entire system of the allocation of deceased donor organs.

Respectfully,

Jane Zill, L.I.C.S.W.
UNOS/OPTN, Living Donor Committee (2007-2009)
UNOS/OPTN, Living Donor Data Task Force (2008)

Transplant Centers' (non)Compliance with Living Donor Follow-up

2011-03-26T19:57:00.005-04:00

Once again, OPTN has proposed policies up for public comment: http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/proposals.asp

Important to living donors is Number 7, regarding the improvement of living donor followup data. It's a document worth reading because it provides the history and background on living donor followup policies and data submission. Buried within its pages are these little nuggets:

On July 22, 2008, the committee chair gave a presentation to the Membership and Professional Standards Committee (MPSC) on the current status of living donor follow-up. That presentation explained that the Committee’s review of LDF forms revealed a large number of programs reported their donors as “lost to follow‐up” when it is uncertain if reasonable measures were taken to contact donors. Additionally, this committee’s review found that completing two data elements (status and date of status) on the form enabled a center to meet requirements for completion of the form.

We had heard rumors of such things, but this is the first time it's been confirmed that transplant centers could, in effect, return an empty form and receive credit for complying with the living donor follow-up policy.

***

If you recall, I spoke some time ago of the OPTN living donor data task force report that was never publicly released (It's good to know people sometimes). Here's their most damning conclusion, finally out for the world to see:

As currently collected, the OPTN/UNOS data are incomplete beyond the point when the discharge form is submitted (up to 6 weeks post donation, but much earlier for most donors) and therefore useless for research or making conclusions about living donor safety.

***

The living donor follow-up policy was implemented in 2000 (technically late 1999) and signed by the Secretary of State, making it mandatory for program certification and Medicare reimbursement. All similar policies require a 95% compliance rate. The centers have opposed this for a number of reasons, one of which being the number of foreign nationals brought into the country to relinquish an organ, and another being their seemingly instinctual rebellion against anyone holding them to any standard whatsoever.

Anyway, for some reason, this proposed policy says:

Also during it September 2010 meeting, the Committee did endorse developing a policy proposal to establish a threshold for the percentage of living donors that any program can categorize as “lost to follow-up” i.e. donor without a valid status (alive or dead) and accurately reported at required post operative internals. The Committee supported establishing a 10% maximum threshold for categorizing donors as “lost to follow-up”.

I am adept at basic math and 10% 'lost' would equal 90% and not 95%.

***

Now here's my favorite part (And by favorite, I mean the info that is most imperative to the public good). I blogged some time ago regarding the fact that some transplant centers have reported all their living donors as 'lost to follow-up'. The source article was no specific than that, but this proposed policy explanation sheds a bit more light on the matter - see page 6.

For living donors who donated from July 1, 2007 through June 30, 2008, a median 61.8% of one-year living donor follow-up forms indicated whether or not the living kidney donor was alive or dead. The number jumps to 75% of liver donors, and there are a lot fewer of them, both donors and programs.

15 transplant centers had ZERO follow-up on ANY of their living kidney donors during that time period, and only 29 were 100% compliant.

So how many met OPTN's 90% compliance rate? That's a little harder to tell since I only have a bar graph that isn't particularly detailed. However, based on the aforementioned numbers (and a handy tape measure), I'd approximate that 40 transplant centers out of over 200 know whether or not 90% of their living kidney donors are alive or dead one-year after surgery.

Living liver donors fared a bit better. Out of 73 living liver donor transplant programs*, 14 had 100% compliance while only 5 had none. Meanwhile the rest had reported somewhere between 1% and approximately 85%.

Do I need to say this isn't good?

The tragic part of this proposed policy is that it doesn't suggest anything revolutionary. It only requires transplant centers to ensure if someone is breathing, a fact that can be cooborated by cross-checking a living donor's social security number in the Social Security Death Master File (meaning that actual contact with the living donor isn't required to ferret out this information). It does nothing to improve data relating to complications, rehospitalizations, insurance status, psychosocial difficulties, or (shock) long-term ramifications.

Why so wimpy? I'll let the document speak for itself:

The Committee supports the collection of clinical data on living donors for a minimum of two years. However, the Committee understands that there is a lack of consensus on the value of clinical data on living donors during the early post operative period, and consequently anticipates there would be resistance or opposition to new requirements to obtain and report lab results for living donors for up to two years at this time.

Just to recap: Data doesn't exist, yet transplant centers have decided that data has no value. I'd like to know the logic behind that conclusion.

And how many years does the transplant industry collect information on recipients? That's right - ten.

*according to the OPTN membership directory.

Hey New York Times - Living Donors Are People Too

2011-03-23T12:19:00.003-04:00

The following is an op-ed I submitted to the New York Times last week in reaction to two op-eds run by the publication: one by Lainie Ross, whining about the proposed kidney allocation policy and getting it wrong, and a response by Brody from the National Kidney Registry. The New York Times apparently doesn't think correcting misconceptions about living donors is important for their pages:

I am appalled by Mr. Brody’s statement: “The real problem [of the organ shortage] is the shortage of living kidneys”.

It has been over fifty years since the first living donor kidney transplant, and the transplant industry still has no long-term data, no standardized evaluation, selection and treatment criteria, and no structured aftercare or support services. Over four living kidney donors die each year in the US within 12 months of surgery. Many others experience debilitating complications: hernia, chylous ascites, pancreatits, adrenal dysfunction, testicular swelling and sensitivity, nerve damage, and chronic fatigue and pain. An estimated 20-30% suffer from depression, anxiety and PTSD, yet not a single transplant center offers experienced mental health services.

The reasons for the organ shortage in the US are three-fold:

1. The aging of the US population. Renal function deteriorates with age. According to the US Renal Data System, the average age onset of end-stage renal disease is 64.4 years old. Yet according to OPTN, transplant centers routinely discard viable organs from donors over the age of 50.

2. Geographical hording. Despite the parameters of the National Organ Transplant Act of 1984 and its 2003 revisions, and CMS Final Rule 2007, we do not have a true national allocation system. Donated organs are offered to recipients within the local hospital first, then the OPTN region (or DSA) and then finally, nationally.

3. Transplants are NOT cures. According to SRTR, 18% of individuals on the kidney waitlist at any time have had at least one prior transplant. Meanwhile, 1/3 of candidates on the waitlist are inactive, meaning they couldn’t accept a transplant even if an organ became available.

Laine Ross and her ilk continue to misrepresent the proposed kidney allocation changes. The current system allows recipients with five-year post-transplant life expectancies to receive kidneys expected to last twenty years, and vice versa. The proposed changes are while far from perfect - they do not address geographical disparities and in some ways, seem to exacerbate them – but they do attempt to minimize the number of transplants each recipient must endure to achieve a ‘normal’ lifespan while facilitating the use of over-50 donor organs for like-matched recipients.

While I appreciate that Mr. Brody is simply earning his paycheck as an employee of the National Kidney Registry, it is abhorrent for him to treat living donors so callously. The public are real people with families, friends, dreams and aspirations, not organ incubators for those with end-stage renal disease.

More Details on the Living Donor HIV Transmission

2011-03-20T21:51:00.004-04:00

http://www.medicalnewstoday.com/articles/219656.php

The moral of the story seems to be that a living donor should be screened for diseases as close to the surgery date as possible.

Fraud in Medical Research

2011-03-18T21:47:00.002-04:00

From Huff Po

And how fun is this: Retraction Watch. A blog highlighting published academic articles that have been retracted.

Finally, Dr. John Ioannidis' 2005 paper: Why Most Published Research Findings are False.

Bioethics and Living Donation

2011-03-17T15:25:00.004-04:00

I just finished reading this article from Stanford's bioethics folks, and I wanted to share some tidbits.

In emotionally wrought circumstances when there may be conflicts between the desires of the patient, the patient’s family and the doctors and nurses providing care, the ethics team works to provide thoughtful, respectful and evidence-based guidance. The team approach is a stark contrast to the early days of medicine when doctors alone made the decisions, often without consulting the patient.

CMS Final Rule 2007 requires transplant centers to provide each prospective living donor with an Indepdendent Donor Advocate. There has been a major struggle in some transplant programs about the role and power of this IDA. Specifically, transplant surgeons have insisted while the IDA can provide 'input' into the discussion, the transplant surgeon will be the biggest, final and last word on whether a living donor transplant will take place.

(If one reads between the lines of certain hospital's descriptions of their living donor programs, policies and processes, one can see the evidence of this power struggle)

Why haven't bioethicists spoken about this?

[bioethicists] also play roles in educating the public, protecting the rights of patients and giving a voice to vulnerable populations.

The entire transplant industry revolves around the needs of the recipient. The living donor is collatoral, a means to the end goal of obtaining a transplant for the recipient. Yet bioethicists routinely talk about the 'recipient-donor pair' as if they're conjoined twins. If living donors, motivated either by their intense emotional connection to their recipient or convinced by the erroneous perception that living donation is 'safe', aren't a vulnerable population, then who is?

Instead, Lainie Ross pontificates all over the media that the proposed kidney allocation policy could mean less living donors. Wouldn't common sense dictate that fewer healthy people putting themselves at lifetime, untold risk is a good thing? Why aren't bioethicists writing essays about the lack of living donor long-term data, or doing interviews about how living donors are being stuck with bills to treat their complications?

For instance, bioethics places heavy emphasis on individual rights, including the ability of informed individuals to freely make decisions for themselves. That focus, says [Renee] Fox, doesn’t always give enough weight to other crucial values, such as the connection between individuals and others, kinship, community and the common good.

This is my favorite:

1. The Hippocratic Oath says "do no harm" (oops)
2. Ethicists say "Nah, it's okay as long as the benefit to the recipient outweighs the risk to the living donor" (First off - wha? Second - living donation is the ONLY medical procedure where, apparently, this sort of logic makes sense)
3. Surgeons have publicly said "If a person is willing, who am I do tell then they can't donate?" Yeah, the autonomy argument the above quote refers to. (The answer: refer to point 1)
4. Yet transplant centers regularly take uninsured living donors, insurance companies refuse to pay for complications, etc. Exactly how in the hell is that good for the individual, community or common good??

When I first delved into the muckery that is the transplant industry, I was pleasantly surprised to find a discipline that actually catered to such matters. But over the course of time, I've found myself annoyed at the field more often than not. This article hits on the biggie, which is the 'think tank' perspective that causes bioethics discussions to drown in theory, forgetting that real people are behind all these quandries. My second pet peeve, which falls under that 'American' criticism, is the overwhelming focus on science and medicine as evidentiary while neglecting psychological, sociological and anthropological variables and consequences. People are the greater than the sum of their parts, which bioethics of all things is supposed to recognize, yet in practice, they don't.

But hey, what do I know? I don't right letters behind my name to have a valid opinion.

CDC report on HIV transmission via living kidney donor in NY, 2009

2011-03-16T23:21:00.002-04:00

http://www.cdc.gov/mmwr/pdf/wk/mm6010.pdf

I'm glad to see a public CDC report, but it'd be nice if OPTN would stop covering their own asses and issue statements about incidents like this.

Govt profits from defaulted student loans

2011-03-13T14:12:00.004-04:00

http://www.credit.com/blog/2011/01/government-profiting-from-student-loan-defaults/

The article is short, but more nauseating are the comments. Each person telling the same story about a lifetime of indentured servitude because Sallie Mae bought Congress back in the 1990s.

I've heard the arguments against bankruptcy protections - these loans are backed by the govt (tax payers) so....

bull. shit.

There are plenty of govt backed homr mortgage programs, including one for veterans. Yet there are bankruptcy protections for each and every one. There are govt backed grants and otherwise for small businesses and individuals and guess what, they don't have to be repaid if things go awry.

Did you know that interest on debt in collections can only be accrued on the original debt? In other words, if you owe 100 at 10%, you can only be charged $1 per lending period. Not so with student loans; interest upon interest upon fees upon charges. It is a system that is impossible to get out of.

ETA: House Education Committee members; Senate Education Committee members

2011-03-12T13:56:00.000-05:00

Rand Paul had an outburst last week during a Senate hearing on energy, finding it 'insulting' that he had to flush his toilet more than once and how dare the govt force consumers not to pollute or waste energy (He used the word 'choice' about a hundred times, which is ironic considering his stance on women's reproductive rights).

I bring this up not to get into some unresolvable debate but as a contrast to my recent experiences at my local post office.

I'm at the post office a lot - 2 or 3 times a week because of my ecommerce business. I'm quite friendly with all the ladies working there, even delving into health concerns and pet issues. I even gave one of 'em my fail-safe recipe for sausage dip.

So I truck in there on Saturday, try to check my PO box and find it locked. I knew I had renewed it at the end of January, so What the Hay? I approach the counter again, digging out my receipt (I hoard them in my wallet for tax puposes), and the friendly postal lady tells me that because of HOMELAND SECURITY I have to fill out this form, show multiple forms of ID which confirm my residential address, and while I'm at it, leave a pint of blood and a jar of urine (kidding).

Maybe my memory is faulty, but I don't recall any terrorists having plutonium sent to their ill-gotten PO Box. Did we not thwart the 9-11 attackers because of a false address listed on their PO Box application?

Exactly HOW does aggravating a PO box holder and making postal employees waste their time keep America safe?

So Mr. Rand Paul, while you're arguing for the option of filling landfills and destroying the environment, could you throw a word or two in there about the absurdity of treating consumers like criminals. After all, we're just doing our part to keep the US postal service fiscally viable.

More Cowbell!

2011-03-11T14:13:00.004-05:00

While having a sneezing fit and flipping channels (yes, I'm multi-talented that way), I happened upon the infamous Blue Oyster Cult, Christopher Walken cowbell skit. Laughed my ass off and distracted me from my rampant snot.

A note in honor of the struggle in Wisconsin: only 19 states allow the recall of state elected officials. Considering what's happening in Ohio, I think it might be a worthy cause to start a petition to have such a law put on the ballot so my state's citizens can hold their elected officials to same standards.

Racial Inequity in Deceased Donor Kidney Transplants

2011-03-07T12:27:00.003-05:00

A recent study published in the Journal of American Society of Nephrology explores the reasons behind the ethical/racial disparities in obtaining a deceased donor kidney (time and incidence of waitlisting, time spent on waitlist, transplants, etc).

The researchers looked at over 500,000 non-elderly* adults who began dialysis between 1995 and 2006, examining measurable factors and how it affected access to transplantation.

Health insurance coverage and poverty were the biggest factors in disparity of transplant rates among blacks (17.9%), Hispanics (14.3%), and American Indians (23.2%). <- And yet another reason to fix our mucked up health care system in the US.

Geographic variation in organ availability was an important factor among Hispanics (13.5%) and Pacific Islanders (19.1%) <- And yet another reason why UNOS/OPTN must eliminate regions and DSAs, making our system truly national.

Household linguistic isolation, meaning an inability to speak english affected Hispanics (7.0%) and Pacific Islanders (6.2%). Linguistic isolation had little effect among blacks and AIANs. <- Just a note for those folks who think it's Un-PC to expect folks living in a country to speak the native language: one's life may depend on it.

The effect on delay to transplantation attributed to measured factors ranged from 8% in blacks to 78% in Hispanics**. <- Let this sink in for a second. Whether or not a Hispanic person in the US will obtain a kidney from the waitlist is 78% determined by insurance, poverty, location, language, etc. Yet some people insist we have no social classes in this country. Okay.

*I'm not certain what the age cut-off is for this term. Unfortunately, I couldn't access the full and entire study.

**This statistic is from a medscape article on the study, where the study abstract says:

The fraction of the reduced transplant rates attributable to measured factors (e.g., demographic, clinical, socioeconomic, linguistic, and geographic factors) varied from 14% in blacks to 43% in American Indians/Alaska Natives compared with whites

Hall YN, Choi AI, Xu P, O'Hare AM, & Chertow GM (2011). Racial Ethnic Differences in Rates and Determinants of Deceased Donor Kidney Transplantation. Journal of the American Society of Nephrology : JASN PMID: 21372209

Panthers, Yeti, Zombies and Aliens - oh my!

2011-03-05T15:40:00.000-05:00

A friend of mine gave me a catalog the other day because he thought I'd be interested in a certain product. While leafing through it, I ran across this:

A two-foot long stalking panther lawn ornament. For some reason, perhaps because it was late and I was suffering from fatigued delirium, I found the idea of plopping this in my lawn and dressing it in ridiculous outfits astoundingly hilarious. Oversized sunglasses, bad touristy tee-shirts, hot pink hats...

Then a few pages later, I found this: ZOMG a YETI!! 28.5 inches tall even. Because I live in the land o' many trees, visitors could relax on our concrete patio with an (alcoholic) drink in their hands, gazing upon our lovely flora and fauna only to stop, lean forward, squint and say - "Um, is that Bigfoot?" And I could say "Yes. Yes it is. His name is Herbert."

As if my nose-thumbing toward suburbia weren't complete, I ran into this little gem: A freaking ZOMBIE. Coming out of the GROUND. LIFE SIZE.

Glee is the only word appropriate right now. Well, the phrase "Wish list" comes to mind too (and "Please, to buy, for me").

At the very least, I plop this little guy next to the sidewalk leading up to the front door. Better than any Walmart greeter, I say.

And sure to tick off the persnickety neighbors; isn't that the point?