Fact Checking AOPO Misinformation

On January 28th, the New York Times ran a heartbreaking guest essay about Tonya Ingram, a 31-year-old woman who died in need of a kidney transplant. Tonya had tirelessly advocated for reforms to the organ donation system, including the government’s monopoly contractors charged with organ recovery, called organ procurement organizations (OPOs).

Tonya even testified before the House Oversight Committee in May 2021 that absent such reforms, she would die. No reforms came, and she was ultimately proven right: she died on December 30, 2022. Tonya was full of joy, and her life was cut way too short.

In response, the Association of Organ Procurement Organizations (AOPO), which is currently the subject of a Congressional investigation for various abuses, including misinformation and anti-patient lobbying, issued an absolutely wild statement in which they spread falsehoods and deflected blame, and, implicitly, disparaged Tonya’s work and dishonored her legacy.

Below is a fact-check of AOPO’s statement, which I post with the hope that facts will prevail, and the reforms that Tonya fought so vigorously for may ultimately be finalized, saving the lives of tens of thousands of other future patients.

Molly McCarthy

3-time Kidney Transplant Recipient

Vice Chair of the Organ Procurement Transplantation Network Patient Affairs Committee

AOPO wrote: Sadly, 17 people die each day waiting for a lifesaving transplant. There is no question that Americans, especially those suffering from acute kidney disease, deserve greater access to organs for transplant.

Fact-check: The number of people who die every day is much higher than 17. Inclusive of patients who die every day after having been removed from the waiting list for becoming “too sick to transplant,” the current number is 32. (The OPTN database is quite difficult to use, however, if you run a report for “waiting list removals by reasons by year” and then add the columns for “died” and “Too Sick to Transplant” for 2022 and then divide by 365, the number is 31 deaths per day. In 2021, when Tonya Ingram testified before House Oversight, it was 33 — see Washington Post.)

Of course, inclusive of patients who never even reach the waiting list — disproportionately patients of color because of racial bias in waiting list practices — the number is much, much higher than that. Using the number 17 erases their deaths and suffering from the story and is simply a function of UNOS’s “accounting practices” in waitlist management to downplay the scale of the system’s failures.

AOPO wrote: Recent data released by the Organ Procurement and Transplantation Network (OPTN) shows how these efforts have resulted in an increase in the number of deceased organ donors year over year for the last 12 consecutive years. Since 2010, the data represents an 87% increase overall in deceased organ donors. Notably, in 2022, OPOs recovered a record number of kidneys from deceased donors resulting in over 25,000 kidney transplants.

Fact-check: These statistics are wildly devoid of context, as has been pointed out repeatedly in response to misleading UNOS lobbying. As former United States Chief Data Scientist DJ Patil has published, “To deflect criticism, OPOs and UNOS have lobbied aggressively to confuse the recent increases in organ donors from opioid and other external causes (i.e., non-medical deaths like trauma, substance use, and suicide) with improved performance overall. If donation numbers are increasing, their argument goes, then the system must be performing well, and so the push for reform must be misguided. This is a cynical attempt to politically profit from the opioid scourge and other second-order effects of the deadly pandemic, mischaracterizing the data to evade accountability.”

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), donation rates in recent years have not even kept pace with simple population growth (see data visualization — here).

If a baseball player had 5 hits in 10 at-bats his rookie year, and then 10 hits in 100 at-bats during his second season, we would all find it risible if his agent argued that he deserved a huge new contract because he doubled his number of hits. Only in this case, what AOPO is shamefully claiming credit for are terrible American public health tragedies, including spikes in opioids overdoses, gun deaths, suicides, and fatal car accidents, including as second-order effects of the Covid pandemic.

The fact that AOPO does not seem to understand the drivers of donation, or even how to describe procurement practice in the U.S., calls into question its ability to identify and rectify system failures. In case anyone has not seen it, here is a video of AOPO CEO Steve Miller testifying before Congress that he does not have a deep understanding of the OPO regulatory system. Based on his comments, I believe him.

AOPO wrote: These numbers show improvement and support that the U.S. is the world’s most successful organ donation and transplantation system, yet there is more to do.

Fact-check: As alluded to above, these numbers do not actually show system improvement. In fact, as a relative matter, the system has gotten worse over this period.

Likewise, these numbers absolutely do not show that the U.S. has the “world’s most successful organ donation and transplantation system.” As DJ Patil wrote in the editorial I referenced above:

“Similarly, a common OPO and UNOS refrain is that the U.S. now has the highest number of organ donors per capita of any country, which they use to characterize the American organ donation system as the “best in the world.” But context is critical. The higher organ donation rates in the U.S. actually reflect higher levels of societal ills, rather than superiority of the organ procurement system.

“More plainly: We have more organ donors in America not because we have a strong — or even remotely adequate — organ procurement system, but because on a per capita basis among wealthy nations, we have many times more deaths in those subsets of deaths that allow for organ donation to occur. This includes 20 to 30 times more opioid deaths, 25 times as many gun deaths, the highest suicides rates, and more than twice as many fatal car accidents — a number that spiked again precipitously last year.”

To give an even more plain speak analogy, imagine that 100 Americans were in one room, and in another room, there were 100 Canadians. In the American room, let’s say 15 of them die in organ donation eligible ways, and our system successfully converts 2 of them into organ donors. In the Canadian room, 2 people die in such ways, and their system converts 1 of them into an organ donor. It is simply 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.

Obviously, the numbers used in the example above are for simplicity, but it is to make the point that using a per capita comparison across different countries is nonsensical. That the U.S. has more organ donation eligible deaths than other countries (e.g., from opioids, gun deaths, suicides, and car accidents) is one tragedy; when we fail to recover potential organ donors, that’s another, and the two compound.

AOPO wrote: A key area of improvement is in the number of organs recovered by OPOs but refused by transplant centers and instead go to waste. That number is rising dramatically. In fact, 7,540 kidneys, amounting to 26% of all kidneys recovered and offered by OPOs for transplantation in the U.S., were turned down by transplant centers last year.

Fact-check: Discards in the U.S. are too high and are rising. There is broad agreement on this. AOPO’s framing of the problem as entirely a transplant center issue, however, is incorrect and overly reductive. There are many contributing factors, certainly including transplant center “weekend effect” and transplant center risk aversion, though also including:

• Differential effort and ability from OPOs in clinical management of donors and waitlist navigating, as evidenced by wildly different organ placement rates across OPOs for clinically similar organs;
• DonorNet inefficiencies and frictions, as identified by the United States Digital Service and reported on by the Washington Post, and testified before the Senate Finance Committee by Mid-America’s Diane Brockmeier;
• Failures of organ logistics and transportation, including deeply unprofessional OPO practices of selecting and managing transportation vendors, as well as gross failures of the UNOS Organ Center, as reported on by Kaiser Health News and covered in the Senate Finance Committee hearing; and
• OPOs often recover kidneys they have no intention of placing for transplant, but, because of an arcane reimbursement system, OPOs are able to overbill Medicare through cost-shifting enabled by explanting more kidneys even if they are not transplanted. There is, honestly, likely an issue of systemic Medicare Fraud here.

The best way to inform solutions on this is to have more transparency into the system. Ironically, this is one of the solutions explicitly called for in the NYT piece — as well as Tonya’s advocacy: to follow the Senate Finance Committee’s recommendations for CMS to publish OPO process data. This is standard in every other mature transplant system in the world, including, of course, all systems with lower discard rates than ours.

AOPO wrote: In Los Angeles, where Tonya Ingram lived, organ donation was up 10% last year — a two-decade upward trend. The local OPO recovered a record 2,143 organs in 2022 but also saw 520 organs rejected by transplant centers, up from 376 the year before. Moreover, 397 of the 520 rejected organs were kidneys, up from 273 the year before. One of these kidneys may have saved Tonya’s life. This rise in rejection rates is disheartening to the OPOs that work each day to increase the number of organs they are recovering. But it is devastating to patients living — and often dying — on dialysis, waiting for an organ. OPOs have no control over whether organs are actually transplanted into patients. Our nation’s transplant centers make this critical decision, determining whether to accept an organ offered from an OPO.

Fact-check: The “two-decade upward trend” framing is addressed above, as well as the organ discard issue. I will note here, though, that OneLegacy’s OPO is Tier 3, failing according to CMS, as it has been for every year that CMS has published Tier ranking data. (In the most recently available data from 2020 released by CMS last year, OneLegacy’s failure to reach Tier 1 standards by 328 transplants, or — in plain speak — 328 preventable deaths.) I would also note that OneLegacy is under investigation by the House Oversight Committee for “shocking mismanagement.”

AOPO wrote: The exclusion from this discussion of our nation’s transplant centers and their regulators as important stakeholders involved in improving the system’s ability to save more lives is a serious oversight. For the entire system to save more lives, we need to ensure that transplant centers have declared clear organ acceptance criteria, have the appropriate resources to process the influx of available organs, and utilize organs from more medically complex donors.

Fact-check: While transplant centers (and UNOS) certainly have some responsibility related to discards, as further expounded on above, the NYT piece itself highlights that the Indiana OPO, in response to oversight pressures, increased organ donation rates by 44% in one year by simply approaching 57% more donors. Restated: the increase did not necessitate behavior changes at transplant centers, new OPTN technology, or any other changes; the major increase resulted through the single intervention of applying oversight pressure to the OPO to follow the existing legal mandate of approaching every donation referral it receives.

AOPO wrote: The National Academy of Science, Engineering, and Medicine’s (NASEM) report — “Realizing the Promise of Equity in the Organ Transplantation System” — which was developed in 2021 at the request of Congress and sponsored by the National Institutes of Health (NIH) is the only peer-reviewed, data-driven assessment of the entire organ donation and transplantation system, and it focuses specifically on kidneys. The report categorically states that the whole system — the Center for Medicare and Medicaid Services (CMS), the United Network for Organ Sharing (UNOS), transplant centers, OPOs, and donor hospitals — bears responsibility for increasing the number of transplants in the U.S. NASEM found that “on average, patients who die waiting for a kidney had offers for 16 kidneys that were ultimately transplanted into other patients, indicating that many transplant centers refuse viable kidney offers on behalf of those on the waiting list (Husain et al., 2019).”

Fact-check: The NASEM report is currently being investigated by two separate Congressional Committees — House Oversight Committee (see Kaiser Health News) and Senate Finance Committee — for apparent financial conflicts of interest among its members, with the Senate Finance Committee writing upon the publication of the NASEM report: “We are concerned that the NASEM report seems to align with the lobbying positions of UNOS and the Association of Organ Procurement Organizations (AOPO), and that these recommendations will not address the concerns raised during our investigation.”

AOPO can help shed light on this by sharing any contracts it — or its member OPOs — have signed with any of the consultants who were members of the NASEM study, including Dennis Wagner of Yes And Leadership. (See Senate Finance letter.) If AOPO is looking for support of the NASEM study as an unbiased, unconflicted resource, there is no reason AOPO shouldn’t be willing to share the financial relationships that would inform whether or not such conflicts exist. Put another way, if there were no conflicts, AOPO would presumably be very eager to clarify that.

AOPO wrote: Rather than referencing NASEM, however, the New York Times editorial relies on the privately funded Bridgespan study from 2019, which claims that OPOs fail to recover an additional 28,000 organs a year is unrealistic. This estimate would only be possible if all potential organ donors said yes to donation, all their organs were medically suitable for transplant, and transplant centers accepted and successfully transplanted all their organs. The report notes that the figures represent the “full potential” of the system, assuming 100% donation rates and 100% organ utilization, an unfeasible measure in the medical field. OPOs nationwide are unwavering in their commitment to saving patients’ lives and reducing the numbers on the waiting list.

Fact-check: This one is, candidly, quite bizarre, as investigative reporting has already highlighted that the AOPO/OPO talking points about Bridgespan are objectively, factually false. Similarly, a letter to the House Oversight Committee from a then-AOPO board member clarified the same. For the abundance of clarity, I will repeat the fact-check below:

AOPO is simply factually incorrect in its assertion that Bridgespan’s study — which was based on peer-reviewed research from leading researchers at the University of Pennsylvania, a former U.S. Surgeon General, and two OPO executives — assumes that “all [of every donor’s] organs were medically suitable for transplant.”

The study estimates a donor potential of 24,007 annually for the years 2009–2012, and an organ potential of just over 50,000 annually (see figure on page 5). As a matter of simple math, this assumes an average of just over 2 organs transplanted per donor, representing an estimate far more conservative than the 3.45 medically suitable organs recovered per donor which AOPO states is industry average. The methodology for this study is clearly laid out in the peer-review publication. It is unclear why AOPO believes that the study assumes 8 organs per donor, or why they continue to assert it despite numerous fact-checks to the contrary.

Additionally, if AOPO does not like Bridgespan’s research, it can also rely on a publicly funded study which HRSA funded and the OPTN performed, which found an even larger donor potential than Bridgespan did. Specifically, the deceased donor potential study, published in 2015, found (see page 8): “Currently, organs for transplantation are recovered from about 8,000 deceased donors per year, potentially only one-fifth of the true potential. These findings suggest that significant donation potential exists that is not currently being realized.” (Note: the donor potential today is now certainly even much higher, given the above-referenced spikes in donor potential driven by the opioid epidemic and other public health trends.)

Finally, I will also note the incredible irony (or gall?) of AOPO breathlessly asserting that Bridgespan’s peer-reviewed 51,000 organ potential conclusion is “unfeasible,” while in the very same statement self-celebrating their imagined future success of 50,000 transplants.

AOPO wrote: Too many patients have put their faith in our system for anyone to waste another minute avoiding responsibility or spreading falsehoods.

Fact-check: Yes, agreed. Extensive investigative reporting has found that AOPO, many individual OPOs, and UNOS have been responsible for the active spreading of misinformation and outright falsehoods. As far as “avoiding responsibility,” not a single sentence in AOPO’s comment accepted any responsibility for anything. I wish they had.