Recent Criticism of Organ and Tissue Donation: "NO!," the Transplant System is NOT ‘in Chaos’!

by Monty L. Donohew

According to a recent article in the New York Times, there are issues within the U.S. organ transplant system about which you should be aware if you are a person awaiting an organ transplant, or an intended recipient (the NYT article is behind a pay wall, but you can access the article for free in the Virgin Islands Daily News by clicking here).  If one could believe the headline, the "organ transplant system" is  "in chaos."  The headline is clearly exaggerated and untrue.   

Before delving into the specifics of the article, however, these challenges do not regard organ procurement or recovery.  In other words, please do not reconsider a donation!  If anything, the article raises issues that would be resolved by a larger supply of donors and donor organs.  In other words, the criticism does not, and should not, mean that if you are an intended donor, that your gift will not be honored.  

The article focuses on the practices of providing organs to patients on a waitlist.  According to the article, procurement organizations like Lifebanc in Northeast Ohio, and Legacy of Hope in Alabama sometimes provide organs to patients that are not at the top of a waitlist.  The story highlights the plight of Marcus, a man who reportedly was "next in line" for a kidney transplant, but who has been "skipped" multiple times in favor of patients at different hospitals. According to the Times, the practice of directing donations that do not strictly follow the "official waitlist" raises concerns about fairness and transparency in organ allocation, especially since some hospitals appear to benefit more than others.

The broader question raised by the authors is whether the U.S. organ transplant system, controlled by a single national network,  lacks transparency, leading to what some believe are inequities in who receives life-saving organs. Reforms have been proposed to increase accountability and ensure that the "official waitlist" is followed more strictly. Some argue that systemic changes are needed to prevent hospitals from unfairly influencing organ allocation and to ensure that every patient has a fair chance at receiving a transplant.  Of course, the article does not discuss or explore whether deviation from the official waitlist has any explanations or virtues, or whether strict reliance upon a waitlist might be disadvantageous.   

The article admits, for example, that there is already a highly regulated "official waitlist." The Times article doesn't really explain "why" patients like Marcus are skipped.  The Times did commission a survey showing that more organs in such cases go to hospitals with what it characterizes as "close ties" to organ procurement networks. The fact that hospitals with ties to organ procurement organizations receive more organs, however, may just reflect the fact that they conduct more donor recoveries and organ transplants, and are therefore more likely to be able quickly stand up a transplantation surgery reducing risk of loss of a donated organ.  The authors imply that any deviation from the list results from undue and unfair influence, and is therefore suspect, but the authors don't explore alternate explanations.  

The article is replete with strong denunciations by some advocates with little explanation why procurement organizations might "favor" one hospital over another.  Of course, procurement organizations haven't helped themselves, because they have not responded to the criticism.  There is no response from either procurement organizations or hospitalists regarding either the survey findings, or the rationale for anomalies explaining why a person might be "skipped."  I sought a response from two procurement organizations with which I am familiar, sharing the broad outline of my intended article, and I was unable to garner comment or response, but, that may reflect nothing more than a disciplined strategy regarding  public communication.

I am not  a doctor, but I suspect that there may be a variety of reasons, admittedly frustrating to a waitlist patient, that explain such anomalies.  For example, the relative proximity of the patient to the recovered organ (long trips for recovered organs present risks) might explain a skip.  The temporal availability of the patient, transplant teams, and/or operating rooms to make use of the recovered organ might explain anomalies (larger hospitals with large surgical staffs may simply be "ready," and/or one patient may relatively make a better candidate "in the moment" than another, regardless of list placement.  There may also be a variety of risk factors specific to a particular patient, hospital, transplantation, or transport.  Any or all of these seem to be pretty obvious possible explanations for deviating from a list. 

It is also possible that list anomalies occur as a result of the HIV Organ Policy Equity Act (HOPE ACT). What is the Hope Act?  It is the Act which permitted HIV positive individuals to make donations of organs and tissue. Until 2013 it was against federal regulation to transplant organs from someone who was HIV positive into a potential organ recipient, even if the intended organ recipient was also HIV positive. In 2013, these HIV prohibitions were deemed outdated by Congress and lifted. The HOPE Act directed the Health and Human Services (HHS) Secretary to develop guidelines to conduct research relating to HIV positive donors and organ transplantation.

Current regulations ensure that an HIV negative recipient does not receive an organ from a HIV positive donor, but HIV positive donors can donate organs and tissues to other HIV positive recipients. The HOPE Act simply gives more people a chance to donate life. Given the limited number of transplantable organs available for the more than 120,000 people who are awaiting transplants, it makes sense to find all possible ways to safely and ethically save as many lives as possible.  But, it also means that any particular organ may not be suitable for the person at the top of the list.  Of course, these details cannot be shared, due to medical privacy (HIPAA).  A doctor can't tell a reporter or a recipient that an organ is positive or negative because that violates the medical privacy of the organ recipient, potentially disclosing a patient's HIV history. I suspect there are similar restrictions for other health attributes, but I am just spit-balling here. The point is that I would be shocked, given such considerations, if every available donor organ went precisely to the next person on the list.

I get a sense when reading the article that at least some critics treat organs like product deliveries from Amazon: "I ordered first, so I should get mine first." The waitlist, however, isn't a "line" at the car wash where the first in line is always, or even should be, served first. 

I formerly taught medico-legal documentation and deposition preparation and conduct "classes" during Grande Rounds at a local teaching hospital.  I considered the opportunity  to work with such amazing minds a privilege and an honor.   I was amazed and impressed at the vast array of variables and considerations medical professionals in a hospital consider and resolve in making even routine decisions.  My strong suspicion is that the article, while certainly well researched, supported, and written, from the standpoint of a layperson, could not begin to report fairly to a lay audience the myriad reasons a simple list is not reflexively adhered to in making such momentous decisions. That does not mean that there may never be some form of corruption in the system, but the mere possibility of corruption extrapolated from a few cases should be considered critically. 

Regardless, if you are a donor awaiting a transplant, you should be aware of the facts, and better, be prepared for possible frustration and/or disappointment.  I would encourage those in positions of responsibility, if they don't already, to explain to patients and families that the waitlist is not a strict line, and manage expectations, frustrations, and disappointment.  Especially for those clinging to last hopes, honestly managing expectations would seem both moral and necessary. 

I also want to be careful that my criticism of the Times article is not woven into the  rhetorical crutch, "fake news." Reporting that raises awareness, asks questions, and challenges, even if by casting circumstances in the worst possible light, should be celebrated.  I am not suggesting that the authors engaged in shoddy reporting; as discussed I believe that the authors cast is probably limited by the fact that they aren't surgeons, hospitalists, or professionals routinely dealing with organ procurement and transplantation questions or concerns.  Professionals understand and appreciate, or should, that these articles, headlines, and narratives may not reflect the "whole story," just like a client's or patient's fears, apprehensions, or concerns, are usually not based upon the "whole story."  To the anxious or frightened layperson, though, these emotions are the only story.  That is why professionals work so hard to cultivate good productive relationships with clients/patients, and where appropriate, their families, so that their decisions and risks can be evaluated carefully, based upon their specific circumstances, thereby leaving them with only appropriate concerns, and realistic expectations.  Reporters, admittedly, are not in that "business."  

Full disclosure: both my wife and I were Ambassadors for Lifebanc.  My clients can attest, though, that I never, professionally "encourage" or "discourage" donation; as a lawyer my  professional responsibility is to see my client's wishes fulfilled.  Most clients have made decisions regarding donation prior to settling an estate plan. I can sometimes play a role in answering questions regarding the procurement and recovery process, and dispel unfounded fears or concerns (the most common being that the family of of a donor bears the cost of organ recovery), but my role as an "advocate "is appropriately left to seminars, public forums, and articles.          

For more information see Bryan M. Rosenthal, Mark Hansen and Jeremy White, "Organ Transplant System ‘in Chaos’ as Waiting Lists Are Ignored," New York Times, March 10, 2025. 

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Recent Criticism of Organ and Tissue Donation: "NO!," the Transplant System is NOT ‘in Chaos’!