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.”"

Liver transplant waiting times and MELD scores around the country (and a calculator you can use)

Here's a story in the Wisconsin State Journal: Access to liver transplants unequal in Wisconsin, nation . (Link to a liver calculator at bottom, by transplant center, etc.)

"Access to liver transplants varies in Wisconsin and around the country, with relatively healthy patients getting organs in some places while sicker patients elsewhere deteriorate or die on the waiting list.

"The geographic disparities persist even after a policy two years ago required broader access to patients most in need.

"Policymakers are proposing a more radical change: Dividing the country into four or eight districts for liver sharing instead of the 11 regions and 58 local areas used today.

"Populous states welcome the idea. It would direct livers to “patients in most urgent need, drastically reduce existing geographic disparities in access and, most importantly, save lives,” members of Congress from California, New York and other states wrote to federal officials after the proposal was released last year.

"But congressional representatives mostly from the Midwest and South said the proposal would disadvantage more rural parts of the country. “Areas with high organ donation rates would be disproportionately affected,” they wrote.
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 "Nationwide, more than 15,000 people await livers, nearly 13,000 of them in active status, meaning they could receive an organ today. About 6,700 people got liver transplants last year.

"Roughly 1,500 people die waiting for livers each year, according to the United Network for Organ Sharing, or UNOS, which runs the transplant system.

"Patients are ranked by medical urgency scores called Model for End-Stage Liver Disease, or MELD. The scores, based on three lab tests, range from 6 for least ill to 40 for gravely ill.

"The sickest patients go to the top of their local waiting lists. But where they rank depends on where they live, as demand for and supply of livers varies around the country.

"Patients getting livers in much of Indiana, Iowa, South Carolina and Tennessee typically have MELD scores of 25 or lower. In parts of California, Massachusetts and New York, the median MELD score at the time of transplant is 33 or higher.

"In Madison’s local area, the median MELD is 28.5. In Milwaukee, it’s 34. In Chicago, it’s 30.

"When the late Apple founder Steve Jobs flew from California to Tennessee for a liver transplant in 2009, he brought attention to one way patients can circumvent the system — by going to places with lower MELD scores and shorter wait times.

"To assist the vast majority of patients who don’t have private jets, Sridhar Tayur launched OrganJet in 2011. The Weston, Massachusetts, company can help people waiting for kidneys or livers get to hospitals in other states in time for transplants, said Tayur, an operations management professor at Carnegie Mellon University in Pittsburgh.

"The cost: $17,000 to $24,000 per flight. So far, about 35 people have signed up for the service but nobody has used it, Tayur said.

He’s trying to get insurance companies to cover the fee. “That would really increase demand,” he said.
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"Opponents of broader sharing also say more time is needed to gauge the impact of a 2013 policy requiring partial sharing of livers.

The policy, called Share 35, gives livers to patients with MELD scores of 35 or higher throughout each region before local patients with lower scores get them.

A Milwaukee patient with a MELD of 36 gets priority for a Madison donor’s liver over a Madison patient with a MELD of 28, for example. Previously, the Madison patient would have received the liver.

What most irks Madison doctors is something called MELD exception points. Extra points can be given to patients with conditions such as liver cancer, who otherwise have low MELD scores.

Use of exception points varies, with some studies showing more liberal use on the coasts.

“People have gamed the system to have livers sent their way,” said Dr. Tony D’Alessandro, a transplant surgeon at UW Hospital.

Dr. Peter Stock, a transplant director at the University of California, San Francisco, said exception points “are only given if they’re truly, truly needed.”

UNOS is looking at creating a national board to review MELD exceptions, which would replace regional boards used today."
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You can get information about different transplant centers around the country, for patients of different ages, blood types and MELD scores using a calculator from the Scientific Registry of Transplant Recipients (SRTR)
 Liver Transplant Waiting List Outcomes Tool Beta

Deceased donor waiting times, and OrganJet

Here's an article by Daniela Lamas in the Atlantic on waiting times by region, and how to register at a transplant center outside of your home region:

A Private Jet Is Waiting to Take You to Your Kidney Transplant
"Waiting lists for donations can vary dramatically between cities--so OrganJet provides planes to fly patients to their new organs."

The article focuses on Sridhar Tayur, and OrganJet: my previous posts on OrganJet are here.

Patients can register at multiple transplant centers to get on multiple (regional) organ waiting lists

You don't have to be Steve Jobs to get a transplant in Memphis.
Here's an interview on multiple-listing yourself.

Multiple Listing to Reduce Wait Times for Transplant Patients
Mediaplanet sat down with Dr. Sridhar Tayur, owner of OrganJet, to learn how to list smartly.

MP: How does geographical location affect an organ transplant?
ST: The wait times are strongly correlated to geography. In New York, New Jersey, Boston, Atlanta, Chicago and Los Angeles, the wait times for kidney and liver transplants are very high compared to those at centers elsewhere. Patients in the high wait areas can list in a center with low wait in other geographies, depending on their insurance coverage and ability to travel or move.
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MP: How can one find a low wait transplant center near their home?

ST: The data is available publicly through Scientific Registry of Transplant Recipients' website and is updated periodically.

MP: What can early transplantation mean for patients?

ST: In the case of kidney transplantation, you could get a transplant before you even go on dialysis. If you are already on dialysis, earlier transplantation has two benefits: better outcomes and less time on dialysis. It is also important to know, for kidney patients who have been on dialysis for a while or have been listed in one center for a while, they can transfer this wait time so far to a different center and so take credit for "time served." For a liver patient, getting a transplant at a lower Model for End Stage Liver Disease (MELD) score also means better outcomes and less inconvenience during pre-transplant time. In all cases, the outcomes are better and life before and after transplant is better. Listing in more than one place is allowed and patients should look into the many benefits of multiple listing. 

Advice to those seeking a kidney donor

I occasionally get emails from kidney patients seeking advice about transplantation. Often they are seeking a donor. I don't have much help to offer when I correspond with them, but perhaps the generic form of my response will be useful to others. I'm assuming in what follows that the advice is for a kidney patient who is already registered on the deceased donor waiting list and with an American hospital that does a lot of kidney transplants.

Sometimes people write to me with questions related to kidney exchange, on aspects of which I've written many blog posts. For someone who is looking for a living donor, kidney exchange means that the donor you find needn't be compatible with you, he or she simply needs to be healthy enough to donate a kidney, and willing to donate one so that you get one. One of the several kidney exchange networks can take it from there; it is probably best to work with the one that your transplant center has the easiest working relations with, although you can find the links to the ones I work with the most as you sort through my posts.

When I write to someone who already has a donor I write more than this about kidney exchange, but if you don't have a donor, you need to think about how to get one.

If you are not already registered on the deceased donor waiting list, talk to your docs about getting on the list, since time on the list plays an important role for kidneys.  But the waiting lists are organized by region, and the wait is much longer in some regions of the country than in others. (That's why Steve Jobs, who lived in California, got a liver transplant in Tennessee.)

A new organization that helps people register on the waiting lists of regions where the wait is shorter (even if that isn't where the patient lives) is OrganJet (which I've blogged about here). They are mostly involved in helping arrange transportation (since you have to be able to travel for checkups etc. at the distant hospital at which you are registered in addition to your local hospital). But their website has an app that identifies transplant centers with  shorter waiting times, and that might be a good way to start, since this is a case in which there may be a conflict of interest between you and your local transplant center.

But a living donor is likely better as well as quicker, if you can find one. Here's a link suggesting how to organize a campaign for a living donor:
 Living Kidney Donor Network founded by Harvey Mysel.

There are various kinds of kidney matchmaking sites, like matchingdonors.com, and more specialized sites like http://www.kidneymitzvah.com/ and Renewal.
My impression is that quite a few donors come from faith based organizations, so if you are a member of some kind of congregation, you might let them know of your search for a donor.

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There are other options that I don't recommend, but here's a post with a link to an article by the Harvard Law professor Glenn Cohen that seeks to shed some light on overseas markets for kidneys, some less black than others.

Glenn Cohen on Transplant Tourism: purchasing organ transplants internationally

(There's a legal market for kidneys in Iran, but I believe you have to be an Iranian citizen to participate in it.)

Equalizing transplant waiting times across regions: OrganJet helps its first patient

Sridhar Tayur at CMU, the founder of OrganJet emails "Thanks for your help and support...our first patient gets her kidney away from where she lives" and points me to this press release--OrganJet customer receives kidney transplant years faster due to smart multiple listing.

"Originally listed in the DC area about 18 months ago, where the median wait time is nearly 5 years -- wait times in nearby Maryland are not that much better -- the 41-year old wife and mother contacted OrganJet for advice and arranged her on-demand jet transportation options (in addition to available commercial choices) just a few months ago. 
"There is significant disparity in wait times across different geographic areas, ranging from over 5 years in areas like NJ, MA, Washington D.C. and CA, while it is half that (or less) in regions like Pittsburgh, PA, Portland, OR and Madison, Wisconsin," said Sridhar Tayur, Founder and CEO of OrganJet and a professor at Carnegie Mellon University's Tepper School of Business. Every year, over 5000 patients die waiting for a kidney in some parts of the US while organs in other regions may go unused.  While the actual numbers of wasted organs is a subject of debate, it is generally recognized to be in the range of 500-2500 annually. "Our goal is to provide affordable options for patients on transplant lists in high wait time areas so that they can increase their access to organs. This improved matching also helps reduce organ waste," said Tayur."
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See my earlier post on OrganJet.

Sridhar Tayur proposes an entrepreneurial way to reform organ waiting lists

Deceased donor organs in the United States are allocated through regional (not national) waiting lists, which leads to some dramatic differences in e.g. waiting times in different parts of the country. Individual candidates for transplantation can register as patients in different regions, if they are healthy and wealthy enough to move around. (e.g. Steve Jobs received a liver in Memphis, although I recall he worked at a company located in California...)  He had access to good transportation opportunities.

CMU professor Srihar Tayur, who will be speaking at Stanford GSB at noon today, has an entrepreneurial project, OrganJet,  intended to give that kind of access to transportation to people for whom it has previously been an insuperable obstacle.  Here's an article about his operation: Can Private Jets for the Poor Save Health Care Dollars?