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