Organ donation contractors have all come under intense scrutiny for their incessant promoting of misinformation — including the United Network for Organ Sharing (UNOS), many organ procurement organizations (OPOs), and the Association of OPOs (AOPO). (For example, see fact-check of AOPO misinformation from the Vice Chair of the OPTN Patient Affairs Committee.)
Bipartisan reforms have been passed by both Congress and the U.S. Department of Health and Human Services (HHS). However, to ensure that these common sense reforms are implemented to help patients and address health inequities, it is important to correct industry misinformation.
Myth: the U.S. is the best organ donation system in the world
Fact check: The U.S. does not have the “best” organ donation system in the world. As a factual matter, it does currently have the highest number of organ donors per capita, a misleading statistic which industry interests hide behind to cover for poor performance. The truth is that high (and increasing) rates of donors per capita in the U.S. result from America’s higher rates of deaths which lend themselves to organ donation, such as opioid overdoses, gun deaths, suicides, and fatal car accidents.
In the simplest terms, imagine that 100 Americans were in one room, and 100 Canadians in another. In the American room, let’s say 15 people die in organ donation eligible ways, and our system successfully converts 2 of them into organ donors; and in the Canadian room, 2 people die in such ways and their system converts 1 of them into an organ donor. It is not statistically reasonable — or intellectually honest — to suggest that this means the U.S. system is twice as good as the Canadian system simply because it had 2 donors per capita instead of 1.
Now consider that the U.S. has 20 to 30 times more opioid deaths than European nations, 25 times as many gun deaths as other development nations, the highest suicides rates, and more than twice as many fatal car accidents. This contextualizes both why the U.S. system — even replete with such breathtaking performance failures — still produces more donors per capita than other countries, as well as why that statistic, in practice, is completely meaningless.
For further information, see a fact-check from DJ Patil, former U.S. Chief Data Scientist.
Myth: recent increases in organ donation means the system is working
Fact check: The recent increases in organ donations every year have resulted entirely from public health trends — such as spikes in opioid and gun deaths — including as a second-order effect of the COVID pandemic. The increases are not — as industry suggests — the result of any OPO performance improvement.
In fact, peer-reviewed data published in JAMA has found that, after controlling for increases in donation outside of OPO control (e.g., public health trends such as the opioid epidemic), donation rates in recent years have not even kept pace with simple population growth. For a data visualization, see here.
For further information, see a fact-check from DJ Patil, former U.S. Chief Data Scientist.
Myth: recent reforms will “privatize” the organ donation system
Fact check: No, the organ donation system is not being “privatized.” This line is simply protectionist fearmongering from the current monopoly contractor, UNOS, which has spent decades lobbying for very narrow restrictions on eligibility for the Organ and Procurement and Transplantation Network (OPTN) contract such that only UNOS would even qualify to bid. (See Forbes and Washington Post.)
Industry interests began this misinformation largely through astroturf campaigns from UNOS board members and affiliates, in response to Congressional reforms which would lift the nonprofit restriction on eligibility to bid on any portion of the OPTN contract. However, this in absolutely no way means that the system will be “privatized”, or that it will somehow become subject to profiteering.
OPTN policy always has been — and, going forward, still will be — made by the OPTN board, which is not a for-profit entity. Additionally, all fees for OPTN activities must be approved by the Health Resources Services Administration (HRSA), and no contractor would be allowed to get a single dollar out of HRSA that another contractor could not, regardless of tax status.
Additionally, the National Organ Transplant Act (NOTA), explicitly prohibits the receipt of “valuable consideration” in exchange for a human organ; what industry is suggesting is simply not allowed under law, nor is it in any way enabled by recent reforms. In fact, such recent reforms actually further strengthen the government’s leverage in holding its contractors accountable, including specifically to combat any inappropriate behavior or profiteering activity.
The industry lobbying line that for-profits will take over policymaking activities and engage in profiteering activities is complete nonsense, and is in no way possible given existing regulatory and statutory constraints which no one has proposed changing. All that will change is that the HRSA now has a larger pool of potential bidders to perform various functions (e.g., data analysis) for HRSA as well as the OPTN board, which helps guard against the vendor lock-in dynamic that entrenched UNOS for decades to the detriment of patients.
As a related fact-check, Organize, a non-profit patient advocacy organization which contributed to this website, is not involved in any attempts to win any OPTN contracts, nor does Organize financially profit in any way from any organ donation reforms. Repeated industry suggestions to the contrary are categorically false.
For further information about the actual problematic influence of profiteering in the organ donation industry, see bipartisan oversight letters from Senate Finance Committee to 10 OPO CEOs into “Potential Self-Dealing And Financial Conflicts Of Interest”, sent in September 2023.
Myth: criticizing the system will undermine trust in donation
Fact check: A standard industry line to quash criticisms is to suggest that any criticism of the donation system will undermine public trust in the system, and by extension will depress donation rates.
Peer-reviewed research, however, has shown that the exact opposite is true. Rightful criticisms of the industry — as well as specific actors within the industry — actually correlate with increases in donation rates, which researchers attribute to the Hawthorne effect.
For decades, OPOs have operated without any competitive, regulatory, or financial pressures to provide high levels of care to patients. Unless and until the government begins to truly hold them accountable, public criticisms of the system have served as something of a stand-in for such systemized accountability, and serve as a tool for patients and caregivers to receive more value from the donation system.
Myth: the rule will decertify a third of all OPOs, which will be disruptive
In 2020, and again in 2021, the Centers for Medicare and Medicaid Services (CMS) finalized a new rule to hold OPOs accountable to objective data. This was long-overdue, and celebrated by every major patient group on record.
The rule works by placing OPOs, based on their performance, into three “Tiers.” Tier 1 OPOs will keep their contracts without facing competition; Tier 2 OPOs can compete to keep their contracts; and Tier 3 OPOs will lose their contracts to higher-performing OPOs. The tier ranking system uses gold-standard epidemiological government data already held by the Centers for Disease Control and Prevention (CDC) to evaluate how well OPOs perform relative to each other on the same lifesaving functions.
Since the rule was finalized, OPOs have been actively disseminating misinformation about two important points. Firstly, OPOs suggest that, because there are three Tiers, that OPOs will necessarily be apportioned into them evenly, meaning that, at minimum, 33% of OPOs be decertified every year. This is simply not true.
As CMS itself published, all OPOs can be Tier 1 in any given cycle. The rule was meant to address the inexplicable performance variability across OPOs — as much as 470% in any given year. Under this new rule, all OPOs can qualify for Tier 1 so long as they are not significantly and inexplicably worse than their other OPO counterparts.
Related, OPOs have fearmongered that decertifying these failing OPOs will necessarily be disruptive. This is also simply not supported by historical data. In fact, there used to be 128 OPOs, now there are 56. The Bridgespan Group conducted an analysis of these historical mergers (which, in practice, is how decertifications will be effectuated) and found no evidence that any OPO merger has ever once been “disruptive” in any conceivable way.
Myth: there is already a study from the National Academy of Sciences, Engineering and Medicine (NASEM) on organ donation, so we don’t need any other reforms
Fact check: The NASEM study is under investigation from both the House Oversight Committee and the Senate Finance Committee for financial conflicts of interest among its committee members. This was reported on in both Kaiser Health News and the Washington Post. (NASEM has also come under scrutiny for being influenced by financial conflicts of interest in other studies as well.)
In fact, the Senate Finance Committee explicitly noted that “we are concerned about the appearance of conflicts of interest among NASEM committee members, particularly those who appear to have a financial stake in the implementation of NASEM’s recommendations… We are concerned that the NASEM report seems to align with the lobbying positions of UNOS and the Association of Organ Procurement Organization