Organjet versus regional transplant lists

Forbes discusses the unequal waiting times for deceased donor organs caused by the fact that transplant waiting lists are organized regionally.

Your New Liver Is Only A Learjet Away: First Of Three Parts

"Tayur’s initial business model for OrganJet was quite simple. OrganJet would charge a modest fee to help clients figure out which transplant programs would be likely to shorten their waiting time for an organ. Clients could then sign up to have access to an on-demand flight, in case one of those transplant programs called up with an available donor. Having a flight at ready disposal is critical because many transplant programs require patients to arrive within six hours after an organ becomes available, or they pass the organ on to the next person on the list. The six hour requirement exists because in organ transplantation, donor organs need to be placed into recipients in a timely manner or the organs accumulate irreversible damage. Thus, if a patient on the transplant waiting list in, say, Pittsburgh cannot make it there in time, the transplant team will call another candidate until it finds one that can make use of the organ.

Excited about his chance to address an important social problem, Tayur began working through the details of his business plan, issues such as how many jet companies he would need to contract with and how much money he would need to charge customers for a given flight. “I envisioned OrganJet as an opportunity to make some money and save some lives at the same time,” Tayur told me, words not that different from what honest medical school applicants would tell interviewers about their career choice. The fees he charged customers for these flights would not only cover the charge of paying for the pilots and the fuel, but would include a surcharge that would be the source of OrganJet’s profits.

Tayur was excited about his idea, but the more people he bounced his business plan off, the more pushback he received. In particular, many people told Tayur his idea would only promote greater unfairness in the transplant system, by further disadvantaging people who lacked the financial resources to pay for OrganJet’s services. Tayur thought he could minimize this problem by convincing health insurance companies to pay for the flights, but his critics pointed out that many low-income patients wouldn’t be able to afford such generous insurance.

Tayur realized his new company needed to become two new companies. He had already incorporated OrganJet as a nonprofit entity in May 2011. So in July of 2012 he started a second company, GuardianWings, a tax-exempt nonprofit that raises funds to cover flight costs for low-income patients. His vision was now clear – he would work to overcome geographic inequities in transplantation one patient at a time, giving everyone a fair shake at life-saving treatments even if they were not wealthy CEOs."
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"Neither Medicare nor Medicaid currently pays for OrganJet’s services, and it is too early to tell whether private insurers will embrace OrganJet’s prices. Tayur, the CEO of OrganJet, is still negotiating with insurance companies on a case-by-case basis. He is also negotiating with large companies that self-insure their employees, presenting them with results of statistical analyses he has conducted which demonstrate that OrganJet’s services could save them money: “It would get their employees off dialysis sooner, not only improving their quality of life in the process, but also allowing them to return to work sooner, with greater productivity.”"

Ben Hippen on the economics of transplantation and dialysis

Dr Hippen replies to an earlier article suggesting that incremental changes in current transplant practice could remove the need to radically increase the supply of kidneys, e.g. through financial incentives...

Debating Organ Procurement Policy Without Illusions

Benjamin Hippen, MD American Journal of Kidney Diseases

"For poor patients, the primary payor for dialysis is Medicare, Medicaid, or some hybrid, unless they are ineligible for these programs. The profit margins of dialysis facilities with an average payor mix of Medicare, Medicaid, and commercial insurance is 3% to 4%.12 Crucially, a facility composed entirely of patients with Medicare and/or Medicaid as the primary payor is financially unsustainable because payments to facilities on a per-treatment basis are, depending on local labor and other overhead costs to the facility, frequently less than the cost to the facility to provide the treatment. Although a dialysis facility requires a minimum number of patients to cover labor and operational overhead costs, the total net margin of a typical facility is achieved through cross-subsidization from collections from commercially insured patients."
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"A staple of opponents of financial incentives is that incentive proposals would not even bear consideration if transplantation professionals would just stop wasting perfectly good kidneys. Citing a 19% rate of organ discard in the United States, the authors argue that if only we biopsied more kidneys before turndown, made more use of organs with a Kidney Donor Profile Index > 85% (previously known as expanded criteria donors), and increased use rates of organ donation after circulatory death just like many European centers, we would be a long way toward solving the problem.

These arguments betray a lack of understanding of the extant regulatory burdens and financial constraints on US transplantation centers. In the United States, the expected risk-adjusted rate of death-uncensored transplant survival for a deceased donor kidney at 1 year is 96% (14; Fig 6.2), and 1-year expected patient survival is 98% to 99%. These outcomes represent the expectations of transplantation centers by CMS regulators, and failure to achieve these outcomes invites intense regulatory scrutiny under threat of involuntary closure.15 In the last several years, nearly 100 transplantation programs in the United States have gone through expensive stressful “mitigating factors” applications with CMS to avoid involuntary closure because of reported outcomes that were below risk-adjusted expected outcomes, although the data and veracity of the methodology used to calculate risk adjustment has been heavily criticized.16 With some frequency, scrutinized centers are required to enter into a Systems Improvement Agreement, essentially a contract with CMS to put oversight of the transplantation program into a multiyear third-party receivership, at extravagant expense to the transplantation center, until reported outcomes improve.

Regulatory scrutiny of programs that fall below expected outcomes is typically accompanied by denial of Center of Excellence status by CMS. Loss of this designation often causes commercial insurers to cancel insurance contracts and direct referrals to other programs. This is a profound incentive to embrace risk aversion.16 and 17 Refashioning insurance agreements and changing ingrained referral patterns is a slow process and can pose significant medium-term challenges to the financial stability of a transplantation program long after the quality issues have been resolved to a regulator’s satisfaction."

Judd Kessler interviewed about organ donor registration on NPR

Shankar Vedantam interviews Judd Kessler about how to ask for registration as a deceased organ donor, on NPR's Morning Edition:

Attempt To Get More People On Board With Organ Donation Backfires
MAY 27, 2015 8:56 AM ET

 The transcript is below, or you may be able to listen to the audio at the link above.

To increase the number of organ donors in the U.S., psychologists have advocated for changes to how we ask people to donate. In California, officials tried something new — but it may have backfired.

DAVID GREENE, HOST:

Many patients in the United States die because there are not enough organs available for transplantation. This is because compared to many other Western nations, fewer people in this country sign up to be organ donors. Policymakers and researchers try experimenting with different ways to boost the rate at which people sign up to be donors, but there's disturbing evidence that one widely used technique is actually backfiring. NPR social science correspondent Shankar Vedantam joined our colleague Steve Inskeep to talk about this.

SHANKAR VEDANTAM, BYLINE: When you go to the DMV to apply for a driver's license, there's a question about whether you want to be an organ donor.

STEVE INSKEEP, HOST:

Sure.

VEDANTAM: And for many years, Steve, the question was you either could check the box that said yes or you could leave the question blank. There was no option to say no. And researchers, a few years ago, suggested it might be better to give people both the yes and the no choices. And the thinking was that people were not saying yes because they were at the DMV and they were thinking about other things. But if you force them to answer yes or no and not leave the question blank, more people would say yes because they'd actually think about it.

INSKEEP: Oh, the notion is you've got to check one box otherwise your application is not complete.

VEDANTAM: That's exactly right. Now, most states have moved to this approach. It's called an active choice approach. And there's new data now from the state of California. Judd Kessler at the Wharton School and Alvin Roth at Stanford analyzed 6 million choices people made before and after this California change, and they compared it with outcomes to 60 million other people in 25 other states. Here's Kessler.

JUDD KESSLER: We found that switching to a yes-no frame actually did not increase the rate at which people registered as organ donors. In fact, we find that fewer people sign up to be organ donors when you put them on the spot and force them to say yes or no.

INSKEEP: Whoa. So when people are told, you must make a choice or your application is not complete, they say, oh, I'm out of here - no.

VEDANTAM: That's exactly right. Now, Kessler and Roth were worried that they were measuring something idiosyncratic to California. So in addition to sort of analyzing the California data, they ran a control lab experiment linked to the Massachusetts Organ Donor Registry. So people came into the experiment, and they could choose to either join or to leave the registry. And again, the researchers found is that when you force people to make a choice - say yes or say no - fewer people signed up to be organ donors.

INSKEEP: Why?

VEDANTAM: Well, it's not quite clear exactly what's happening and why they're making that choice. It could be that actually people were thinking about their decision about whether to be organ donors in the initial case and they were choosing not to be organ donors. Some countries are also experimenting with the idea that you get to be first in line to receive an organ if you've previously signed up to be an organ donor, and that links self-interest to being an organ donor. Kessler thinks his experiment might have actually discovered something else. During the Massachusetts lab experiment, he found that although everyone in the study had previously been asked whether they wanted to be a donor, just the act of asking them again prompted many people to say yes.

KESSLER: Subjects who came into the laboratory had the option of changing their organ donor status. So that meant people who were currently registered could remove themselves from the registry or stay on, and people who were not registered could choose to add themselves to the registry. And what we found in our study was that subjects were 22 times more likely to add themselves to the registry than remove themselves from the registry.

INSKEEP: When they're asked more than one time, which makes a kind of basic human sense. If I'm in the DMV and I'm confronted with this question, I haven't thought about it maybe in advance - I mean, I just say no. I get out of there. But when I'm asked a second time, maybe I've had a chance to think it over.

VEDANTAM: Yeah. And the other thing that might actually work is to not just ask people at the DMV. It might not be the best timing to ask people when they've just spent 45 minutes waiting in line to get a driver's license. In Alaska, people get asked whether they want to be organ donors at the same time that the state sends them their annual dividend check. This is the check that Alaskans receive as part of the state's oil revenue. And it turns out that Alaska has the highest rate of organ donors in the whole country.

INSKEEP: So give people money - they're feeling good - then ask them for their liver.

VEDANTAM: Precisely.

INSKEEP: Shankar, thanks very much.

VEDANTAM: Thank you, Steve.

Kidneys in British Columbia: a recommendation for presumed consent, and against compensation for donors

Kidney Transplant Summit recommends presumed consent legislation to increase organ donation in BC.

"BURNABY, BC, May 6, 2015 /CNW/ - The Jury at the first-ever BC Kidney Transplant Consensus Summit hosted by The Kidney Foundation has recommended that British Columbia adopt presumed consent legislation, with the appropriate safeguards in place, to increase the number of kidney transplants in this province.

The Jury, chaired by the Hon. Wally Oppal QC, also considered but rejected the idea of offering financial incentives to organ donors. Living organ donors are currently reimbursed for expenses incurred in donating an organ, but not for the kidney itself. "As a society, we do not condone the sale of organs," said Oppal."


HT: Sangram Kadam

The difficulties of deceased donation by the terminally ill

Two transplant surgeons, Joshua Mezrich and Joseph Scalea at the University of Wisconsin, write in The Atlantic about a terminally ill patient who wished to be an organ donor.

As They Lay Dying--Two doctors say it’s far too hard for terminal patients to donate their organs.

"Two major obstacles have prevented us from helping W.B. The first concerns his desire to donate a kidney while he is still alive. In his weakened state, will he tolerate the anesthesia and surgery? Or will they hasten his death? If he survives the surgery, will he ever leave the hospital?

"As doctors, we have sworn to do no harm. And yet, every Wednesday and Thursday morning, we remove kidneys from living donors. These patients are not getting any medical benefit from donating one of their kidneys—to the contrary, they are accepting a small risk of complications, including hypertension and a slightly increased likelihood that their remaining kidney will fail. But they do experience a very real, if intangible, benefit: the experience of saving someone’s life.

"In evaluating W.B.’s request, we had to weigh carefully not only the risk to him—which W.B. clearly understood—but also the risk that a donor death after surgery would pose to our hospital. Transplant-surgery programs in the United States are scrutinized by an alphabet soup of federal and nongovernmental entities. Centers with worse-than-expected transplant outcomes can be placed on probation or shut down. A single bad outcome involving a living donor can lead to an investigation. While there are good reasons for this monitoring, it can cause surgeons to avoid complicated cases and innovation. If we were to remove one of W.B.’s kidneys, and he died one, two, or even six months after surgery, his death would be a very public black mark on our program.
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"From the earliest days of transplantation, surgeons subscribed to an informal ethical norm known as the “dead-donor rule,” holding that organ procurement should not cause a donor’s death. In practice, this meant waiting until patients were by all measures completely dead—no heartbeat, no blood pressure, no respiration—to remove any vital organs. Unfortunately, few organs were still transplantable by this point, and those that were transplanted tended to have poor outcomes by today’s standards.

As the field burgeoned, doctors could see the potential to save ever more lives—if only more organs could be found. In 1968, in an effort to address the shortage of transplantable organs (as well as the delivery of futile care to people in irreversible comas), an ad hoc committee at Harvard Medical School suggested that patients with no identifiable brain function could be designated as “brain-dead,” thereby making them candidates for organ donation. The definition the committee came up with informed the Uniform Determination of Death Act, a model state law drafted in 1980 and subsequently enacted by most states, which holds that brain-dead patients are legally dead. Under the new state laws, doctors could remove organs from patients whose hearts were still beating without violating the dead-donor rule.

Although the dead-donor rule is ostensibly a fine standard, it doesn’t address the situation of most people who are terminally ill. Nor do the laws regarding brain death. Today, terminally ill patients’ best—in many cases, only—chance of passing on their organs is via a wrenching process known as donation after circulatory death, or DCD, whereby a patient’s doctor withdraws all life support while an organ-recovery team stands by. For organs to be successfully transplanted this way, however, the donor typically needs to die within an hour or two of being taken off life support—otherwise, decreased blood flow leaves the organs unsuitable for transplantation. Even when DCD organ donors do die in the allotted time, we tend to recover fewer organs from them than from brain-dead donors, whose bodies aren’t subjected to this drawn-out process.

Over the course of a single week while we were writing this article, three potential DCD donors at our transplant center had life support removed with the intention of donating their vital organs, but failed to die quickly enough.
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"When the term brain death was introduced half a century ago, it was meant to provide an objective legal definition for a group of patients whom we might otherwise describe as “unrecoverable.” Of course, we also recognize as “unrecoverable” many patients who do not meet the standard for brain death. Those who have suffered devastating strokes or heart attacks, or who have sustained major head trauma, may not be brain-dead even though they have brain injuries that render them unable to survive without life support.

"A more useful ethical standard could involve the idea of “imminent death.” Once a person with a terminal disease reaches a point when only extraordinary measures will delay death; when use (or continued use) of these measures is incompatible with what he considers a reasonable quality of life; and when he therefore decides to stop aggressive care, knowing that this will, in relatively short order, mean the end of his life, we might say that death is “imminent.” If medical guidelines could be revised to let people facing imminent death donate vital organs under general anesthesia, we could provide patients and families a middle ground—a way of avoiding futile medical care, while also honoring life by preventing the deaths of other critically ill people. Moreover, healthy people could incorporate this imminent-death standard into advance directives for their end-of-life care. They could determine the conditions under which they would want care withdrawn, and whether they were willing to have it withdrawn in an operating room, under anesthesia, with subsequent removal of their organs."
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HT: Frank McCormick