Comments on OPTN Proposal #6: Transplantation of Non-Resident Aliens

[Michael]

Comments by Jane Zill on OPTN proposal #6, posted at her request:

Subject: Proposed Revisions to and Reorganization of Policy 6.) (Transplantation of Non-Resident Aliens)

The social context in which this proposal is put forward is:
1.) The presence of organ trafficking within U.S. borders;
2.) Proliferation of transplant programs with mounting international concern about organ trafficking;
3.) Lively social debate about compensation to living organ donors;
4.) The emergence of Kidney Paired Donation (KPD);
5.) Concern about the long-term safety of living organ donation in light of inadequate long-term data on living organ donors;
6.) Awareness of disease transmission to recipients from infected living and deceased donors;
7. ) And, continued OPTN resistance to accountability, donor data collection, and standardized donor evaluation.

On October 27, 2011 Levy Izhak Rosenbuam pleaded guilty to three counts of organ trafficking, becoming the first person in the U.S. charged with organ trafficking.  According to Rosenbaum, his attorneys, and federal prosecutors, the transplants took place at major U.S. medical centers.

The media director of Johns Hopkins is reported as stating, "All potential donors and recipients are interviewed multiple times by a team of providers during a rigorous screening process.  However, no matter how thorough our policies and procedures are, the pre-transplant evaluation may not detect pre-meditated and skillful attempts to undermine and deceive the evaluation process." *

A transplant surgeon from Florida, Linda Chen, M.D. stated that, "It is difficult to determine whether individuals are being honest about where their organs come from.   We need to get the message out there that it is a highly regulated process governed by the United Network for Organ Sharing and the Organ Procurement and Transplantation Network." *

Yet, this proposal does not create safeguards to prevent illegal activities at U.S. transplant centers, but instead diverts attention to unneeded modifications to data collection, eliminates ethical considerations, loosens safe guards to protect against illicit organ trafficking, allows for discretionary oversight among a small group of industry insiders, and allows OPTN member centers to contract with foreign sources of organs, neglecting oversight for U.S. patients who receive these organs, and only provides for a paper trail to document the process in which the organ was procured from the donor.

Although the proposal cites the Declaration of Istanbul as the impetus to clarify the data to be collected to determine the impact of transplant tourism on U.S. citizens, data about this already exists.  For example, the proposal states that 400 Non-Resident Aliens are added to the wait list each year, and approximately 200 Non-Resident Aliens receive deceased donor transplants each year.   Additionally, it has been found that Non-Resident Aliens have a more rapid progression on the waiting list to receive a liver transplant than U.S. citizens/residents. *

The proposed changes do not address the Declaration's call for national self-sufficiency in transplantation, instead, "The proposed policy changes make no attempt to use citizenship or residency status in the allocation of organs."  The National Organ Transplantation Act (NOTA) is employed to claim that allocating deceased donor organs to Non-Resident Aliens is consistent with requirements that organs matches are based upon "established medical criteria," interpreting NOTA to be unconcerned about citizenship and residency.

The proposed revisions for data collection will obscure efforts to identify Non-Resident Aliens involved with organ trafficking and will enhance concealment of this criminal activity.   This is so because the proposed changes will allow residency to be defined, "simply as whether the patient considers the U.S. as the primary place of residence whereas currently the definition in 6.1 is based on legal immigration status." Although, it is claimed that it is easy to deceive transplant centers regarding illegal organ procurement activities, allowing Non-U.S. Citizens donor candidates to self- select Non-U.S. Citizen/U.S. Resident is akin to condoning these activities.
Currently, the Living Donor Committee (LDC) has a proposal for public comment about the medical evaluation of living donors but details about the psychosocial evaluation are absent.   The combined impact of the LDC proposal with the proposed revisions for data collection will be that information needed to determine the psychosocial suitability of potential living donors may not be obtained.

Living organ donors and Independent Donor Advocates should be included as Affected Group.

The data collection forms to be modified  "pending programming," are not named. Apparently, there has not been a public comment period about these changes.
The data collection revisions will not provide information about the impact of transplant tourism on U.S. citizens/residents, will decrease center vigilance of organ trafficking, will confuse the national wait list, and may increase transplant tourism.

* Sources provided upon request.

Jane Zill, L.I.C.S.W.

[Clark]

Thanks, Jane!