Who Pays for Human Organ Transplantation?

In response to a recent article in these pages about human organ transplantation in Kentucky, it was alleged that the University of Kentucky Hospital accepted Medicaid as payment for solid organ transplantation but that the Jewish Hospital program did not. I interviewed a number of individuals with first-hand knowledge but was unable to dispute the assertion that the source (or lack thereof) of a patient’s health insurance makes a difference in who receives an organ— not only here in Kentucky but nationwide. I recently obtained comprehensive payer-specific information from the United Network for Organ Sharing (UNOS)– the government-sponsored organization that regulates and oversees virtually all organ transplants performed in the U.S. The short answer is that there is a considerable difference in the payer-mix for solid-organ transplantation between Jewish Hospital and the University of Kentucky (UK). In 2013– the last year for which a full 12 months of reporting is available– Medicaid beneficiaries made up 6.4% of all transplant recipients at Jewish and 15.9% at UK. These figures can be compared to the national proportion of 8.7% Medicaid beneficiaries. It cannot be said that the Jewish Hospital program does not accept Medicaid beneficiaries altogether. Additional details and commentary concerning local and national transplant programs are presented below. Frankly, I had not encountered such data before and I think it will be of general interest to many.

Source of the data.
UNOS hosts an extensive interactive database, much of which is available to the public on its website. Center-specific information is available on a wide range of elements from 1988 to the present for both donors and recipients. Non-patient-identifiable data is presented in custom reports by organ, sex, age, ethnicity, graft survival, status of donor, numbers and time in waiting lists, and much more. I was impressed! However, in this age of spiraling medical costs, the absence of information about cost or insurance coverage was noticeably absent. As it happens, some such data has been collected beginning in 1994 but had not been made available on the website. At my request, the good folks at UNOS gave me a massive series of spreadsheets identifying the primary payer broken down by every organ, every state, every transplant center, and for every one of the last 20 years. A smaller amount of information is available about the insurance status of living organ donors as well. There is enough information to choke a horse, and extracting data form the heavily formatted tables is tedious, but I have bitten-off a manageable amount to begin some discussion.

Specific categories of payer identified.
Some 96% of all transplants since 1994 had as their primary payer either private insurance (46.5%), Medicare (40.5%), or Medicaid (9.0%). Smaller proportions of less than 1% each were covered from other (mostly) government programs. Any secondary sources of health coverage such as Medicare supplements are not included. For presentation below, I combined three different Medicare categories in the collected data to consolidate traditional fee-for-service Medicare and Medicare Managed Care since 1994. Only a single Medicaid designation was provided by UNOS and while I wait for confirmation, I am provisionally assuming that it includes Medicaid Managed care.

National statistics.
Table 1 (PDF attached) identifies the primary payer source for all solid organs nationally (except combined kidney-pancreas) and for the three solid-organ transplant programs in Kentucky for the years 2011 through 2013. Data collection for 2014 is not yet complete and is omitted. For the most recent comparison year of 2013, I was surprised to learn that overall, the federal government was the largest payer for organ transplantation,covering just over 57% all recipients. Private insurance covered 41.8%. Of the big three, Medicaid covered 8.7%.

Results vary by organ!
The payer mix varies for the specific organ transplanted. (See Table 2.)  Because virtually all patients with chronic kidney failure on dialysis become eligible for Medicare, that federal program is the major payer for kidney transplantation. In 2013 the big three for kidney were Medicare (58%), Private (35.3%), and Medicaid (4.8%). For all the other organs, private insurance was the predominant payer. Medicaid was the third most frequent payer except for intestine for which Medicaid was second at 32.1%. This latter apparent anomaly may be due to the relatively large proportion of covered children undergoing this procedure. Perhaps an expert reader can clarify any of the observations above (or below for that matter).

Results in Kentucky.
The UNOS numbers confirm that economic factors are determinative of whether a prospective transplant patient is accepted to a waiting list and makes it to actual transplantation. Even in our major urban area with more than our share of medically indigent people, the proportion of Medicaid patients receiving an organ at the Jewish Hospital program is less than the national average (6.4% vs. 8.7% in 2013). In contrast, the proportion of Medicaid patients at UK was 15.9%, almost double the national proportion and 2 1/2 times that of Jewish. The University of Kentucky program also had a slightly higher proportion of private payers and considerably fewer Medicare patients than Jewish. No doubt there are many other factors that effect the patient profiles presenting to these two centers— it is a complicated business. However, given that UK makes the point that it accepts Medicaid beneficiaries as a matter of public policy, the considerable difference between these two centers begs to be explained as a matter of social justice.

The solid-organ transplantation program at Kosair Children’s hospitals is smaller than that at its sister Kentucky programs with only 99 transplant procedures recorded in the UNOS database since 1994. Over the years, the three major payers were more or less evenly represented, although in recent years Medicaid and disabled Medicare recipients appear to be in the majority. Because of the small numbers, little more can be said here.

Kentucky by organ.
As is the case nationally, payer mix by organ varies in Kentucky. Table 2 above also extracts the Kentucky numbers for 2013. As expected, Medicare plays a larger role in kidney transplants. There are no doubt several dynamics that influence payer mix.  For example, the percent private insurance for heart transplants at both adult transplant centers is much lower than the U..S average. The total number of heart procedures at both is relatively small– 11 and 14 for the year.  It might be necessary to adopt a more liberal payment policy for heart in order to maintain a minimum number of procedures for Medicare accreditation. Private patients may be being referred out-of-state by their physicians to higher volume centers. Perhaps there is not enough demand in KY for heart transplants such that all candidates are being served.  Someone with more practical experience than I will need to address these matters.

Because the annual volumes of all transplants in Kentucky is relatively small, a few patients  may distort the percentages statistically one way or the other by chance.   I will extract the total experience since 1994, and if it adds to the discussion, will append it here.

No information is available to me about the insurance coverage or financial status of deceased donors, but that is an unknown close to my heart and which is driving this series of articles. The cost of harvesting and preparing organs from dead donors is generally assumed by the payer of the recipient. I am uncertain how matters are handled for live donors of a kidney, or portions of livers, lungs, pancreas or intestine. According to UNOS, of 5988 live donors in 2013, 79.7% were insured, 14.2 were uninsured, and the status of 6.1% was unknown.

What are we to make of all this?
The business of organ transplantation carries with it all the baggage of our health system in general but is punctuated by the high cost of the procedure, subsequent medical and pharmaceutical requirements, and the scarcity of available organs. In such a situation, the already impaired access to our main-stream healthcare system faced by disadvantaged persons is magnified. It is a reality that persons of limited financial means, those without employer-sponsored health insurance, or those belonging to ethnic groups that have been systematically disadvantaged by structural racism do not fully enjoy the financial and quality benefits of our healthcare system.

What if you are poor?
The proportion of Medicaid patients in a hospital has long been used as a marker for its share of uninsured and medically indigent patients. Do even the 9% Medicaid transplant recipients nationally fairly reflect the insurance status of people, let alone the medical necessity of those making application for a transplant, or are the poor winnowed out even before making a waiting list? I do not have information about the insurance, or financial, or ethnic status of potential transplant recipients to render a fact-based opinion about the degree of exclusion, but I have little doubt such individuals are blocked at the starting line just as they are for most other medical services. Of the 28,192 people who received a transplanted organ in 2013, only 39 (0.1%) were provided services considered to be donated or free. Even if we include some of the 79 “Self-Pay” recipients, is this enough to justify the non-profit status of transplant centers? I am sure there are no questions asked about the financial status of families who are asked to donate the organs of their loved ones. In ironic counterpoint, it is considered inappropriate to offer compensation to donors or their families!  In this government-regulated and essentially government-financed enterprise, and with the full weight of law and omnipresent marketing behind it, it is this discrepancy between those called upon to donate and those eligible to receive that has led me to characterize this aspect of the American transplant industry as the “Reverse Robin Hood” approach to healthcare— taking from the poor and giving to the rich. I welcome anyone to make the contrary argument. I would like to be wrong.

Why is it so different in Louisville and Lexington?
Can anyone make the argument that the indigent of Louisville are being as well served as those in Lexington? Where do the medically needy from Western Kentucky go when transplant is needed? Do they bypass Louisville for Lexington? I am impressed and grateful that the University of Kentucky views it as their duty to accept Medicaid as payment-in-full for transplant services, but even UK has not listed any “donated” or “free” transplants in the last twenty years. Perhaps some of their 12 “self-pay” patients fell into these categories. Perhaps they were successful in securing public funding for their patients.

Who should hold the monopoly on transplantation?
In Kentucky, a center needs a state Certificate of Need to offer transplant services. Given the degree of federal and state support for organ transplantation in law, finance, and in promotion; and given concepts of equity and justice concerning who should have access to those services; and especially given an obvious difference in commitment to the public exhibited by the state institution in Lexington— when and under what conditions is it defensible to give a transplant monopoly to a private institution? The surgical staff at Jewish Hospital are members of the faculty of the University of Louisville, but the transplant program itself is in private hands, a pair that has promised to provide healthcare to the needy of Kentucky regardless of ability to pay. What should therefore reasonably be the expectations of the Commonwealth and its citizens for our transplant centers, or those of citizens in other states for theirs?

How should the trains be run.
I have been writing about these issues for the past 3 years and it is no secret that I am unhappy with the degree of access and equity inherent in our current American health system. Sadly, I do not see a transformation to a “Medicare for all” solution in my lifetime, but what about for organ transplantation? We are already as a society paying for kidney transplants for all who need them medically and for half of the other organs. Why not just extend the coverage to all those for whom transplantation of other organs is medically necessary. How can we justify our current organ-based discrimination? No one should have to have to shake a can or offer a bake sale to raise money for a transplant. And while we are at it, lets assume a legal presumption of consent that suitable organs are available for donation to those who can give them an extended life?  Why stop there? How about basic healthcare for all such that untreated hypertension and diabetes does not lead to the need for so many kidney transplants in the first place.

Enough for now. Tell me how wrong I am— please!  If I have made errors in fact or interpretation, or if there are other rational explanations for the differences I have observed, please let us know. If there is another view of the data you would like to see, or if you would like to see the profile of another center, let me know that too.

Peter Hasselbacher, MD
President, KHPI
Emeritus Professor of Medicine, UofL
January 16, 2015