No’s on NOTA?
There have been two recent posts regarding transplantation in affiliation with the Chronicle of Higher Education from Michele Goodwin, a legal and medical scholar from the University of Minnesota.
The first is a response to the furor caused by a girl refused transplant because she was disabled/had Wolf-Hirschhorn Syndrome, a case we also mentioned here at TransplantInformers. Goodwin’s position at the conclusion of the post
For one thing, status and stigma continue to influence organ transplantation at the ground level. If we had an abundant supply of organs available, very likely there would be no discrimination. But our biggest problem is that we simply do not have enough organs in our supply pool—and with restrictive federal procurement laws, dating back to 1984, we never will. Doctors try to manage this, sometimes clumsily, but their hands are tied. Amelia’s story fits in here, even though she has a donor—some doctors think that donors should only supply to the organ transplant list. Until federal law is changed, discrimination may persist in organ-transplant politics.
This leads into the second post which more pointedly asserts that the National Organ Transplant Act (NOTA) is outdated and is not equipped to address the changing realities of organ allocation. As the piece explains,
In short, NOTA limits all contributions to the U.S. organ supply pool to organs that are altruistically supplied. In other words, it prohibits any “valuable consideration.” At the time, Congress was directly responding to one rogue doctor, who…proposed brokering organs from poor people of color in the Caribbean.
…But, Congress ran with the issue and drafted a NOTA, which federalized organ procurement and allocation. That wasn’t so bad as information sharing was maximized. Problematic, though, was the stipulation that there could never be any valuable consideration for an organ. This means that a prospective patient or third party can’t even provide a cup of orange juice, piece of toast, thank you gift of any sort, let alone money to a potential donor. The law is that restrictive.
NOTA’s provisions have also come under fire from the recent court ruling which recognizes it but circumnavigates it in the allowance of compensation for peripheral blood stem cells in donation.
This highlights differing positions urging the overturn of NOTA. Goodwin’s position is that it doesn’t work because
NOTA is a disincentive to organ procurement for most Americans who would otherwise like to donate, but cannot afford to do so. They simply cannot take the risk that they might lose their job or not be paid for the wages lost.
Since it prevents the kind of provisions that would otherwise protect donors and maintains this disincentive, Goodwin is essentially arguing the the organ/donor supply is severely diminished in a way in wouldn’t otherwise if compensation restrictions weren’t so stringent. Her argument seems more for labor protection as compensation, and making it possible for working class people to more easily participate in donation.
AADP’s own advocacy and work to pass the Michelle Maykin Donation Protection Act is one step in this direction, but it is far from a wholesale opening for the full gamut of financial considerations for donation. And as a state law, the question of how much this may run counter to NOTA is still under question.
More strongly arguing for compensation, the recent case which has ruled for the donation of peripheral blood stem cells to be considered outside the purview of NOTA–though still keeping bone marrow extractions within it–takes the compensation opening farther, with the plaintiffs offering college scholarships to donors, for example..
However there are appeals, notably waged by the Obama adminstration and the National Marrow Donor Program/Be the Match. And the “unexpected and disastrous consequences” of the ruling are not to be taken lightly:
there are obvious reasons for prohibiting selling organs or even blood marrow cells, which requires a precise genetic match. “Congress might have been concerned that every last cent could be extracted from sick patients needful of transplants, by well-matched potential donors making ‘your money or your life’ offers,” the opinion said.
The donor registry said its experience is that “a donor system that relies on the human desire to help others is far superior to one that focuses on self-gain.”
Not to mention the potential exploitation of vulnerable populations of patients and donors, which is still an issue even in donation that is legally compensated. Types of financial consideration and compensation are still under fire from many corners.
Moreover, that differentiation in compensation puts the patients health at risk as well. For example, in some scenarios it may be more clinically sound to perform a marrow donation but the only matching donor wants to donate peripheral blood stem cells because of the compensation. Rather than the physician and patient making a clinical decision about what will produce the best outcome, it instead basically gives the donor a disproportionate amount of power to make those health decisions based on their desire for compensation rather than what will benefit the patient most.
In the case of peripheral blood stem cells vs. marrow, as harvesting/treatment options for hematological diseases/disorders, a recent report from the American Society of Hematologists meeting showed research where GVHD was higher in patients that received PBSC, as opposed to bone marrow harvested through extraction, even though clinically engraftment is usually better with PBSC. This means that marrow donation might not be phasing out as quickly as people might think, and decisions of desperation and compensation might overrule clinical outcomes if the compensation differential meant to capture emergent and more widely adopted clinical procedures may start to show a disjuncture that eventually must be reconciled in one way or another. The current court ruling is merely a legal stopgap in making a more definitive juridical and ethical pronouncement.
In any case, with growing arguments out there, and attempts to revise or challenge NOTA and its premise whether through legislation, court rulings or public advocacy mean that decisions on brightline of compensation and altruism, indeed the very values that drive donation are seriously under question. We must continue to critically scrutinize these values and how this changing landscape affects the work of donor recruitment.