Sridhar Tayur: A Pragmatic Idealist at Work

 

John Kenneth Galbraith, The Good Society: The Humane Agenda (1996):

 

“Any useful identification of the good society must therefore take into consideration the institutional structure and the human characteristics that are fixed, immutable. They make the difference between the utopian and the achievable, between the agreeably irrelevant and the ultimately possible.”

 

Q: The easiest solution appears to be that the organs should be shared across regions and there should be one national list. Why has that not happened?

 

A: There are 58 Donor Service Areas (DSAs), each with one or more transplant centers that operate as autonomous units. If you track the money, the pre-op and post-op activities are low revenue and low margin activities while the transplant itself, beyond being challenging and prestigious, is the high revenue and margin activity. Every transplant center tries to maximize the revenue (and margins) subject to acceptable amount of risk in the transplant. It is a balance of volume, revenues in excess of costs and outcomes.

 

Q: Why is there geographic disparity in the first place?

 

A: There are several factors including population density, demographics, donor rates, effectiveness of the OPO (Organ Procurement Organization) and helmet laws.

 

Q: Why are organs wasted?

 

A: Sometimes the organs recovered are not usable due to their condition and so it is not a waste per se. However at the time of recovery it was felt by the OPO that it could be used. There is a bit of an incentive issue here as well that Dr. Frank Delmonico told me about. The OPO gets paid (and so do the surgeons) even if the organs are not used. Obviously if there are too many recovered and not used some red flags will go up, but then again it is not clear how carefully some one is looking.

 

Now there are organs that are recovered and are usable but not actually used. The match locally may not be good as the patient volume is small but a satisfactory match may have been found in a larger patient population across DSAs.  Furthermore, even if a medical match is found locally, if they are in a region with low waiting times then the patient can afford be “picky” as a better quality organ may come up soon. This is a rational choice. 

Another aspect of the industry is worth noting, something that Dr. Ben Cosimi told me about. Not all transplants are equal in complexity, thus varying in effort and outcome. But the payment to the transplant center is fixed! Thus a transplant center that already has good volumes would prefer to “pass” on this transplant to avoid lowering their margins and potentially their outcome statistics. By the time all the local patients and surgeons have “rejected” the offer, time has passed making the organ even less usable. All this time, the organ could be made available to folks outside the region. Some of it is done especially in the case of livers – and accepted by other regions where patients cannot be very picky or transplant centers need the volume even at lower margins. In fact studies have shown that organs that leave a region are usually of a lower quality, and transplant centers in DSAs with high competition – many transplant centers in the same DSA sharing organ supply and competing for patients – land up doing more “complex” kidney transplants with far inferior outcomes.

 

Q: So high waiting time areas also have low outcomes when transplanted and also low likelihood of transplantation?

 

A: Yes and it very clearly seen in data on kidney transplants. However, here is an interesting twist that I read about recently in an AJT (December 2012) paper co-authored by John Roberts. There is an interesting case of a transplant center in a region with low waiting times that also imports lower quality livers – available for use there because the region where it was recovered does not want to use it and places it on a national list – and performs transplants on healthier patients (measured by low MELD scores) using these organs! Thus, they use local livers – relatively high quality – on patients with higher MELD scores and low quality organs on patients with lower MELD scores, increasing their total volumes, while keeping acceptable statistics on outcomes. In fact, one can see clearly that the patients accepted on the waiting list for liver in this transplant center have a MELD score much lower than in other regions, and also have lower MELD scores at time of transplantation. This tells you that the “optimization” problem being solved here in not “maximize a given patient’s outcome” (as assumed in academic literature) but somehow balancing outcomes across patients while maximizing revenue (and margins).

 

Q: Why can’t a patient just move to a different region?

 

A: Some people – mostly the retired ones who are quite well off – do move. The issue is the uncertainty in waiting times. The fact that the median time is 2 years does not mean too much as the 75% and the 90% percentiles of wait times can be 3 and 4 years respectively even in the “fly in” regions. Even when you are close to the top of the list as measured by accrued wait times being in excess of the median, the remaining wait times can be long and uncertain. If you have a job – and your insurance depends on it – and your family is in a “fly out” region, you have to stay there from a practical perspective.

 

Q: How are you going about trying to reduce the geographic disparity and organ waste?

 

A:  I am reminded a bit of Pablo Picasso:

 

“I begin with an idea and then it becomes something else.”

 

In the beginning, all I wanted to do was to provide affordable access to timely on-demand jets.  For livers the time window is six hours, and for kidneys the window is longer but it is highly recommended that one try to get there within eight hours. Let us call this Patient Transportation Service (PTS). I thought that would be enough. As I spent time on this, it became clear that more was needed and so we added Patient Advisory Service (PAS) to advise patients where to multiple list. 

It then became even more apparent that basic awareness of this possibility itself was very low, even among the educated and middle class Americans: transplant coordinators and nephrologists need to do more when they spend time with the patients. This meant that change had to occur from within the system and that without support from UNOS and influential medical centers it would be difficult to get beyond a few cases. 

Even with this, it is possible only for those with sufficient wealth and certain type of private insurance to actually execute this strategy. Thus, it is important for private insurance more generally and Medicare to consider payments for pre-op activities and actual on-demand travel. This will reduce the total costs while improving patient quality of life and reduce number of deaths.  Yes, I know it sounds ridiculous: “Private Jets for the poor reduces health care dollars while improving patient quality of life and increasing number of lives saved.” 

In fact, a single distant listing may be sufficient in many cases. Something that WalMart has been doing for its insured for over 12 years: regardless of where the patient lives, they are listed (and transplanted) in one of the four Mayo clinics and they are transported there on a private jet when organs become available. It is for these reasons that at OJ+GW we have introduced “distance listing” into the vocabulary and have placed it in addition to multiple listing.

 

There is another thing one should be aware of with respect to inequity that is not geographic but based on income and wealth. Many people on dialysis are not even put on a single (local) list because they cannot afford the immunosuppressants beyond the 3 years that Medicare pays for. This itself is an unconscionable injustice worth correcting—many believe that while 90,000 are on the list, another 90,000 (called the “shadow list”) actually exist.

 

Q: How long do you expect the progress to take?

 

A: I expect it to be quite a long journey. This is a process that we are just beginning, in our collaboration with UNOS (under the guidance of its president John Roberts) and influential “fly out” medical centers like MGH (Boston) and “fly in” centers like UPMC (Pittsburgh), Children's Hospital (Pittsburgh),  and University of Wisconsin (Madison).

 

Consider the issue from three different points of view: (1) The fact that private insurance is responsible for only about 3 years of a patient care before Medicare picks it up adds significant distortion.  (2) The “fly out” transplant centers are concerned that their “best” – most healthy and with the best private insurance -- patients will likely list (and get transplanted) elsewhere, leaving them with a higher proportion of “difficult” cases thereby affecting their profit margins as well as by creating more effort on average. They instead prefer to lobby for a change in the organ allocation rules. (3) The “fly in” centers are largely supportive of OJ+GW as long as it does not drive a change in organ allocation! Some of this is well encapsulated in Katharine Wolf’s Second Year Policy Analysis (SYPA, with OrganJet as the sponsoring client) at Harvard Kennedy School presented in the spring of 2012. The challenge is to get several decision makers across different organizations to read it, look beyond their self-interest with greater sensitivity to a patient and society perspective, and think about worthwhile changes that can be made.

Beyond money, there are other political and legal challenges as well that appear to give certain rights for a region to limit the export of organs.

 

In the mean time, by “cross subsidizing” and creating a nonprofit entity GuardianWings we can support some patients who cannot afford to pay.  What makes OJ+GW sustainable is that the up front costs are not very high and the on-going operating costs can scale sub-linearly with volume. To make it affordable to as many patients as possible, we are segmenting how “distant” one needs to list to significantly increase their chances of transplantation (and reduce wait times). Sometimes a “prop-jet” can do—say from Connecticut to Cleveland, or Boston to Pittsburgh – and this reduces the cost significantly. There are times one can take a commercial flight (especially for those living near NYC), and in some cases – say from Ithaca, NY to Pittsburgh, PA or from LA to Lucille Packard Children’s Hospital near SF – one can just drive. Dr. Jim Markmann of MGH calls the driving option “OrganWheels.”

 

Q: How much multi-listing is needed to remove the disparity?

 

A: Only 15-25% need to multiple-list to achieve near equality in wait times (for kidneys). Using data from UNOS, we find that if 17.3% for Type-B blood and 21.8% for Type-O blood multiple-list that will make wait times pretty uniform across the US. We also find that 60+% of patients that benefit are concentrated in 5 or 6 regions. All patients in the “fly in” location will see some increase in wait times – but with more organs now used as they will be less picky – the effective supply of organs will increase reducing (but not fully eliminating) waste. Even with the increase the wait times in the “fly in” regions will be lower then the reduced wait times in the “fly out” regions. 

 

Q: You believe in an intellectual approach to coming up with a concept of justice?

 

A: Perhaps my response to this is best by paraphrasing Marilynne Robinson, When I Was a Child I Read Books (2012):

 

“We are profoundly indebted to the learnedness, in fact the intellectualism, of the Founders, and if we encouraged a real and religious intellectualism we might leave later generations more deeply indebted still….And [Jefferson] gives us that potent phrase “the pursuit of happiness.” We are to seek our well-being as we define our well-being and determine for ourselves the means by which it might be achieved.”

 

Paraphrasing one of the founding fathers, Thomas Jefferson:

 

“In a nation whose citizens are to be led by reason and persuasion and not by force, the art of reasoning becomes of first importance.”

 

Q: So religion also comes into this?

 

A: As one of my friends said “If you talk about organs and money, or even just organs, God and religion will almost surely come up at some point if not within the first few minutes.” Part of the differences in opinion related to payments to induce greater organ donation do come from positions taken by religious leaders. For example several (Jewish) Rabbis (who are not averse to financial payments to donors) have a different position from the (Catholic) Pope.

 

Q: What is your view on the role of money? 

A: This is a very complex question. My very simple answer at an individual level is there are three levels of the role of money: (1) what is needed to enjoy a decent life; (2) a “rainy day” fund to buffer the various ups and downs of life, including health care needs; and (3) to quote Brad Bird, the two-time Oscar winning director (The Incredibles and Ratatouille) from Pixar:

 

“Money is just fuel for the rocket. What I really want to do is to go somewhere. I don’t want to just collect more fuel.”

 

In this context, suppose a third party philanthropist – not related to the OPO, the recipient or the transplant center -- wants to use his or her money as the fuel to provide some financial support to the family (or estate) of the deceased donors, then is that ok? Many surgeons and others I have spoken to think so. I think a patient advocacy group in NYC is also looking into financial incentives for increasing donor rates as one of their top two initiatives for 2013.

 

Q: So there are many initiatives in parallel?

 

A: Yes. I break them down into three buckets: (1) Matching supply and demand, which is what multiple listing does within the current system; (2) Increasing supply, some of which is automatically achieved due to increased traffic in “fly in” regions, but more can be done by increasing supply in “fly out” regions (and perhaps everywhere) through financial incentives; and (3) Reduced demand, which I think is a longer term and most likely the most effective approach, by preventing kidney failure by better managing diet, exercise and handling diabetes.

 

 

Q: Are there any international initiatives?

 

A: Dr. Frank Delmonico, as President of TTS, is now spending time and energy to improve transplantation around the world (in conjunction with WHO). For example, he will be in New Delhi in  March to see how one can improve education, skills and policies in India with respect to kidney transplantation. And then there is the whole business of organ trafficking to deal with.

 

Q: What does the end-game look like?

 

A: Ideally, the goal of any social enterprise is to eradicate the very injustice that was the reason for its creation in the first place and so having done that to simply cease to exist! In this case, that would mean (a) a different organ sharing mechanism and/or (b) a vast increase in organ supply and/or (c) a dramatic reduction in demand. If OJ+GW can help patients within the current imperfect system while nudging the system towards a permanent change that is some combination of organ sharing across DSAs (that also reduces wastage), increased supply (through more donor consents, obtained through some combination of better education that increases “opt-in” donors, modest monetary payments to their estate for funeral expenses or other financial incentives) and decreased demand (through preventive methods of managing obesity and diabetes) that would be the most desirable journey and end game.

Q: Any closing thoughts?

A: Let me quote from John Rawls, A Theory of Justice (1971):

“The way things are does not determine the way they ought to be.”