Misinformation and Mixed Message from Someone Who Should Know Better

http://www.nephronline.com/features.asp?F_ID=479

At the above link, Dr. Cooper, a transplant surgeon in Maryland and the head of the OPTN Living Donor Committee, waxes poetic on why living donation rates have decreased over the past five years, citing barriers such as out-of-pocket expenses and insurance issues.

His first error, however resides in this statement:

no coverage exists beyond three to six months from donation even for conditions that may be related to the donation.

Wrong. 42 USC 1399 rr, aka the Social Security Act 1881, passed in 1972 gave living donors a Medicare benefit, to whit:

Any individual who donates a kidney for transplant surgery shall be entitled to benefits... Reimbursement for the reasonable expenses incurred by such an individual with respect to a kidney donation shall be made...for all reasonable preparatory, operation, and post-operation recovery expenses associated with such donation... Payments for post-operation recovery expenses shall be limited to the actual period of recovery.

However, in 1974, the director of the SSA insisted that transplant centers send all living donor-related bills to a recipient's insurance (gotta keep those Medicare costs down). Since private insurance provides a much higher reimbursement than Medicare, transplant centers happily complied. Meanwhile, living donors are unaware of this benefit, and people like Dr. Cooper perpetuate the misnomer that it doesn't exist, creating the very barriers he's now protesting against.

Dr. Cooper then praises the National Kidney Foundation's "end the wait!" initiative for addressing these problems, displaying its recommendations as examples:

- improve the outcomes of first transplants
- increase deceased donation
- make the donation system and processes more efficient and equitable, and increase living donation.

I've read and re-read these objectives multiple times and nowhere do I see anything that benefits living donors. Nothing about a living donor registry to FINALLY begin compiling comprehensive data on living donors to determine the true long-term effects; Nothing about improving Informed Consent; Nothing about mental health services; Nothing about aftercare. Dr. Cooper spends an entire essay trying to convince the reader that the safety and care of living donors are his first priority when his admiration of NKF's goals reveals the wolf beneath the wool cloak, the man behind the curtain, and the true lizard countenance of the Visitors - like so many of his counterparts (including NKF), his primary concern is really about procuring more organs for would-be recipients, and coincidentally (or not) generating more revenue for his transplant center. This revelation is contradictory considering Dr. Cooper's position with OPTN, and worse, disappointing to those of us trusted him to do the right thing.

Definition of Succes, tranplant style

http://www.ajc.com/opinion/system-punishes-organ-donors-189025.html

The above link is a short editorial from a living donor waxing poetic about insurance comapnies' tendency to deny living donors care and coverage due to a 'pre-existing condition'.

The very end of the editorial says:

Kathie McClure, an Atlanta attorney and the founder of VoteHealthcare.org, successfully donated a kidney to Dan Krinsky in August.


Sucessful for whom? Mr. Krinsky, who is apparently recovering well, or successful for the surgeons and transplant center because they managed not to maim Ms. McClure during the procedure?

Ms. McClure is now at a higher risk for hypertension, cardiac problems, and severely reduced kidney function, kidney disease and kidney failure due to her donation. She may suffer from depression, anxiety and PTSD as a result of her experience.

The problem is that everyone in regards to transplants are framed in terms of the recipient. If the graft sticks and the recipient is discharged, the process is deemed a success. No one considered the fate of the donor, immediately, short-term or (even worse) long-term. Hell, UNOS loses 40 of living donors 6 months post-surgery; we have no idea what happens to these people, and the transplant centers distance themselves from living donors as soon as possible, providing no aftercare and siphoning them off on their primary care physicians.

Daniel Huffman donated a kidney to his grandmother when he was 17 years old. He put a bullet in head a few years later. Everyone considered his donation to be 'successful' too.

Kidney Donor Billed For Complications - & He's Not the Only One

http://www.statesman.com/news/content/news/stories/local/2009/11/01/1101donors.html

(read the whole article; below are excerpts)

Knisely, a 53-year-old tax analyst for the state comptroller's office, has received numerous notices that his insurance company was billed thousands of dollars by the hospital, doctors and other medical providers for treatment of post-surgery complications such as pancreatitis, an inflammation of the pancreas. Knisely said he also has been billed directly several times and has been contacted by a collection agency because he wouldn't pay.

Kimberly Tracy, a 51-year-old dialysis nurse who lives in Dayton, Ohio, donated a kidney to her nephew in 2001 and said she had to provide her insurance information to the hospital to get pain medication from the surgery.

"It was either that, or I was going to have to suck it up and go home without any," she said. She ended up using her own insurance to pay for the medicine and other transplant-related bills, including a later surgery, she said.

Knisely said the hospital did not tell him that if ever he loses his insurance with the state comptroller's office where he and Vara, 52, work, some insurers might consider a single kidney to be a pre-existing condition and a possible reason to deny future coverage.

Laura Odom, a 52-year-old mother of five in Wheaton, Ill., said after she donated part of her liver in 2002 to her sister-in-law, who had liver disease, she was billed incorrectly for the transplant and for treatment for later complications. She said it took about six months to straighten out the billing, but she's had ongoing health problems since the transplant, including chronic pain and a grapefruit-sized hernia in her diaphragm that led to serious intestinal problems.

She can no longer get private insurance because she is considered to have a pre-existing medical condition, she said. She is on Medicaid now.

Everything was done so hurriedly to save her sister-in-law, she said, that she didn't know that in the process of donating part of her liver doctors also would have to remove her gallbladder. That has contributed to her digestive problems, Odom said.

"In retrospect, I would have done things differently. I would have had a notebook and gotten things in writing," Odom said. "I have a recipient who has her life back, and now I'm sicker than she is."

October in Ohio

This is the Land of Many Trees, aka my back yard. Looks beautiful, doesn't it? (click to enlarge photo for full effect). Except who do you think will wielding a leaf blower all weekend long? Yeah.

Which Master Does UNOS Serve?

Yes, I am an info junkie. Fortunately, I have friends who are also info junkies so we swap links and articles (believe me, this is a much better 'ring' than some out there on the 'net).

Recently I was sent "Please UNOS, Transplantation is a Fragile Public Trust" by Dr. George W. Rutecki. He highlights UNOS 'lack of oversight' as stipulated in a 2007 GAO report, meaning that despite bad behavior on the part of transplant centers, UNOS doesn't do a damned thing about it (Please read the article for the overview of people dieing and otherwise).

Near the end, he makes this statement:

They are not able to be police because they represent the transplant community, not patients.

While this might fly counter to common sense, it's absolutely true. UNOS was originally created to deal with the procurement and allocation of deceased organs. In other words, their job was to administer the national waiting list and ensure that donor organs were distributed equally. As years have worn on, these duties have expanded, and the line between UNOS and OPTN has blurred considerably (OPTN is a government agency; UNOS is a private contractor hired by OPTN).

However, the point remains the same. UNOS is comprised of 'members', theoretically representing all aspects of the transplant community.

Let's break it down:

- 250 transplant centers (who generate huge revenue for each transplant they perform)
- 58 Organ procurement organizations (the folks who deal with deceased donor organs)
- 154 laboratories (because they make big bucks on tissue typing all those organs and would-be recipients)

And on a generous note, the 'members' that could possibly be a bit more neutral or patient-guided:

- 21 medical scientific organizations (they don't reveal whom, and considering UNOS is an arm of a public policy organization, I'm wondering if they can legally conceal that information, but I digress. I also wonder if any of them are pharmaceutically connected, especially in the realm of anti-rejection meds)
- 2 business members (same as above)
- 9 individual members (same as above)
- 10 public organizations

By sheer numbers, the interests of UNOS are heavily weighted in favor of the transplant centers and those orgs that benefit from MORE surgeries. However, this dispartity worsens when one peruses the list of 'public organizations'.

Every single one of them are recipient-related. They all have the goal of increasing the number of donor organs available so more transplants can be performed and more 'sick' recipients potentially healed.

There is not a single voice out there for living donors or the unwitting and well-meaning public constantly targeted to be future living donors.

So who is UNOS serving by NEVER shuttering a single transplant center, regardless of their destructive behavior? And exactly whose interests are they furthering when they concoct Paired Kidney Donor Pilot Projects that have NO safeguards for the living donors?

Not me. And certainly not the tax-paying public to whom they owe their existence.

Halloween Cuteness

Facts alone won't suffice for the field of bioethics - art caplan

[my comments are below this essay]

Facts alone won't suffice for the field of bioethics
by Arthur Caplan

When you get old enough as a practitioner in any field young people seek your advice about what they should do if they want to do what you do. Given that my age seems to be increasing exponentially this has been happening to me with increasing frequency. Undergraduates, high school students, medical students, those pursuing degrees in law and nursing and even those interested in a mid-career change have been asking me what they need to do if they want to pursue a career in bioethics.

I have thought about their question quite a bit. I have come to realize that the answer is not the same for everyone who presents the questions. But, the core of the answer is pretty much the same; pursue masters level training in bioethics, acquire familiarity with key social science methods and tools, learn something about a particular sub-area of the health sciences or life sciences and, seek out every opportunity to fine tune your analytical and rhetorical skills by working with others on projects, research, consulting, or teaching activities. At its heart bioethics is an interdisciplinary activity and knowing how to work with others who do empirical, historical, legal and normative work is a must.

I had thought that advice to be sound until I heard Zeke Emanuel's plenary address to open the most recent annual meeting of the American Society of Bioethics and the Humanities. Zeke espoused a vision for future bioethicists that I think is narrow, misguided and wrong. Now I say that in the spirit that Zeke himself enjoys--vigorous debate about a matter that both of us consider of the gravest importance.

Zeke Emanuel, a physician with a degree in political science as well, is one of the best and brightest scholars in the field of bioethics. His writings are solid and exemplify how best to integrate empirical inquiry with normative analysis. And the 'shop' he has run at the NIH Clinical Center for many years prior to moving into the Office of Budget and Management to work on health reform has done an outstanding job training younger scholars in the ins and outs of bioethical inquiry. These facts are precisely why Zeke's recent plenary address to the American Society of Bioethics and the Humanities was so disappointing.

Zeke began his speech by joking that he knew much of what he had to say would annoy his audience. He then proceeded to argue that the future of bioethics and of bioethicists depended upon the field moving away from its high public profile in political, media and policy debate. What bioethics needs, he argued, is a beefing up of the shabby empirical foundation it now relies upon for its normative and policy claims.

The only way for bioethics to flourish, to paraphrase Zeke's key contention, is if bioethicists spend less time in public places, more time mastering quantitative methods and publishing empirically grounded research on topics such as informed consent and surrogate decision-making at the end-of-life in peer-reviewed journals. He also went on to add that he did not find any merit in masters programs or PhDs in bioethics since without a more robust empirical foundation there could be little value in such training.

A young, wanna-be bioethicist, Zeke contended, would be best served seeking training in behavioral economics, psychology, decision theory or perhaps, he grudgingly conceded, sociology. Those armed with these tools could be expected to create the rigorous empirical foundation that bioethics now sorely lacks. Moreover, Zeke predicted, those willing to enter bioethics by heading down his prescribed path can expect generous financial support in the form of a pot of gold provided by a National Institutes of Health poised and eager to provide funding for rigorous research.

Before any prospective bioethicists answer Zeke's clarion call for rigor by dusting off their applications to departments of economics and the behavioral sciences let me try to point out why Zeke's vision about what bioethics should be is severely myopic as well as inadequate.

Zeke's call for bioethics to take a sharp empirical turn has power because it is embedded in his talk of the importance of data and rigor. Both are indeed important for bioethics for a variety of reasons. But, neither will get bioethics where it needs to be if it is to serve health care providers, patients, policy makers or the public.

Bioethics, in my view, has a duty to engage the public with bioethical questions. The topics that bioethics grapples with--how to manage dying, the use of reproductive technologies, what to do to maximize the supply of transplantable organs and tissues, how best to promote clinical and animal research, what information you should expect to receive as a patient about your diagnosis and treatment--are of keen importance and legitimate interest to everyone, rich and poor; young and old around the globe. Part, albeit part, but nonetheless a crucial part of the bioethicists role is to alert, engage and help to illuminate ethical problems and challenges both old and new in the health and life sciences. Note I do not say to solve them nor to be seen as an authoritative source to whom bioethical issues ought be assigned. Rather bioethics' role is both Socratic and prophetic--challenge, probe, question, warn, chastise, alert, and, as Zeke appreciates, irritate the powers that be when necessary.

In this role of moral diagnostician bioethicists must be responsible and strive for clarity in provoking public attention and debate. However, in this role data is often absent, in dispute or woefully poor. In addition questions loom large and pressing, passions run deep and fear and ignorance are omnipresent companions to doing bioethics with an eye toward helping the public understand issues and options. To engage in the public role that bioethics has and should enthusiastically continue to play in the media, policy, education, legislation and the law more tools are needed then empirical data no matter how rigorous or precise that data and the means used to generate it may be.

One must be able to present a cogent argument, know the areas of consensus that have been established about ethical issues over the history of medical ethics and bioethics, have a familiarity with health law, the infrastructure of policy and a grasp of political, cultural, literary, historical and social dimensions of what makes morality tick in various cultures. In the absence of these skills and knowledge data is completely and utterly blind, even useless. That is why it is precisely this skill set that the aspiring bioethicist should expect a masters program or a PhD program in bioethics to provide in order to gain the analytical and argumentative skills to competently and responsibly carry out the crucial public role bioethics has.

At the end of the day bioethics is a public activity which uses empirical inquiry and information as a tool. Admittedly empirical data are the most important of the tools in the bioethicists toolbox but still they are only one of the types of tools that are used.

Zeke's vision of bioethics completely confuses the instrument--compiling reliable empirical information relating to normative issues--with the job--informing the public about problems, options and suggesting possible avenues for their resolution.

Zeke's vision makes a bit more sense if one focuses on the role that bioethics plays within health care for professionals and institutions. There bioethicists often act as consultants or help formulate policy in ethically contentious areas working with providers and administrators and sometimes even payers. But even in this setting, while data is often essential it is never sufficient. Much of what occurs in doing an ethics consultation, for example, has as much to do with knowing how to mediate a dispute as it does a recitation of the facts of a case or having at hand well-supported information about the consequences of various courses of action. In many other situations the 'facts' are not known and won't be known--ever because the human interactions are too complex. Bioethics at the bedside is very much an ethical, social and personal activity and while data has a part to play it has about as much a part to play as it does in our everyday lives and decisions which is to say--sometimes it matters, often it does not.

Before the young bioethicist is told to follow Zeke's path of empirical positivism consider one other fact. We will not in our lifetime or that of our children ever achieve the kind of empirical certitude about much of anything of the sort that Zeke suggests will help future generations of bioethicists do their work. For every ethical problem for which sufficient data exists to point toward an answer a hundred blossom for which the data don't. For every ethical problem for which sufficient data have been assembled to make an answer rational, sensible, or even self-evident there are many where behavior, policy and practice do not and cannot be made to conform to that data. Sometimes data alone can point toward an answer. Almost always, however, it is a prior moral argument that points toward the use to which data will, could and ought be put whether that be in medical practice or in medical ethics. And more often then not moral and value arguments simply moot data and that situation cannot be rectified by appeals to more data.

Zeke ended his remarks that day by acknowledging he was not really trying to end the public role or policy dimension of bioethics. Rather he was just trying to reorient the field's priorities. I would suggest Zeke be heeded but only half-heartedly.

More data is needed in bioethics. More scholars with empirical quantitative skills are needed. That said, if the goal of bioethics is not simply to produce every-increasing amounts of NIH funded empirical data but rather to make a difference for the better in the lives of patients, their health care providers, scientists, and the general public then what we need and will continue to need are bioethicists who know their history, understand the power of cases, stories and analogical reasoning, can mount cogent, coherent arguments based on the best information at hand, who are comfortable talking with a state legislator, an NIH institute director, a TV talking-head, an athletic coach, a small town family doctor and a minister. Aspiring bioethicists would be well served to develop that full skill set and to seek out bioethics programs that can teach them to meet all of those needs.

***my thoughts below***

The general wisdom is that the there are only two reasons to pursue a PhD - to teach or to conduct research*. Ironically, those two tasks require quite different skill sets, resulting in a swath of effective professors who conduct research as the price of being able to share their passion and knowledge with others, and enthusiastic researchers who consider the teaching their trade-off for having research facilities and grants at their disposal.

Then there are the few that branch out beyond the classroom (and lab) to communicate with the public. They understand the world is made up far more laypeople than bureacrats, more journalists and bloggers than academics. These folks, PhD's or experts THEY may be, know that the secret to any society making progress and changing policy (policy being a reflection of a culture's values) resides in the will of THE PEOPLE. Not the politicians or think-tank elitists, but the average voter who worries about paying their bills and not being laid off in the months leading up to the holidays.

Bioethics, despite the 'scary' name, is a multi-faceted discipline. Master's programs are meant as 'companion' degrees, a specialization of sorts to an already existing field of study (medicine, mental health, philosophy, economics, etc). The PhD programs are seen as expansions on already indicated interests or experiences - many prefer candidates to have a master's degree in some other discipline. Bioethics, by its very nature, requires the ability to understand different perspectives, those of individuals as well as organizations, and find a balance between them.

Dr. Caplan is advocating for bioethics to be both expert and everyperson, to have the ability to communicate with all levels of knowledge and experience, and to make the isses of bioethics personal and accessible. He is insisting that bioethicists have the nearly impossible capacity to detach themselves intellectually while remaining connecting emotionally to the human experience.

And he's absolutely right.



*The exception being a practicing psychologist, of course.

Two Living Donor-related bills in Congress

* A $5000 tax credit for unreimbursed costs associated with living donation, including lost wages, has been introduced in the House of Representatives (HR 218). This would provide much-needed relief for those who give the Gift of Life by helping to defray costs associated with living donation, such as travel and lost time at work.

* Another bill (HR 2776) would guarantee job protections under the Family Medical Leave Act for those who must take time off from work to be a living donor. While this is unpaid leave, it ensures that the living donor can take time off and the job will be available when they return to work.