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Organ donation in dire need of reforms

In the last year, I’ve lost three people I love to the organ donation shortage. I am tired of crying. I am tired of saying goodbye. And, frankly, I am exhausted of the government contractors responsible for their deaths fighting with their constituents rather than for them.

Wayne Dunlap, CEO of New Mexico Donor Services, had a wildly misleading guest column in the Nov. 16 Journal regarding proposed, pro-patient reforms to organ procurement organizations (OPOs), the government monopoly contractors who run the organ donation system.

The relevant context is that, historically, OPOs have been evaluated only on self-interpreted, self-reported data. This has masked severe underperformance – disproportionately borne by communities of color – and enabled a culture of fraud, waste and abuse, which is currently the focus of a bipartisan investigation by the powerful Senate Finance Committee.

Despite this, however, no OPO has ever lost its government contract because the regulations governing them are so poorly written as to be legally unenforceable. To address this, the U.S. Health Department finalized reforms last month to ensure OPOs meet reasonable performance standards, and which promise to save – at a minimum – an additional 5,600 lives every year, and likely thousands more.

Unsurprisingly, these common-sense reforms to save patients’ lives have met with broad, bipartisan support. Also unsurprisingly, with so much to lose, many OPOs have engaged in a well-funded, special-interest lobbying campaign aimed at blocking proposed accountability measures. It is no wonder why, when 34 of the nation’s 58 OPOs were deemed in the federal government’s analysis to be failing what will be the new standards. Sadly, New Mexico’s is among them.

Dunlap repeats many of the claims OPOs have been pushing. Perhaps he missed previous fact-checks from organ donation policy leads in the Obama and Trump White Houses, patient advocates, and even the past president of his own trade association.

For instance, Dunlap asserts, without explanation, “the proposed metric is deeply flawed and has no way of evaluating performance.” This disagrees with the nation’s former chief data scientist, who supported these metrics in the Journal of the American Medical Association.

Dunlap then argues OPOs must be high performing because “the U.S. has the highest performing organ recovery and transplants in the world (and) our country has seen year-on-year increases in donation and transplants over the past 10 years.” However, peer-reviewed research finds “it is indisputable that nationally the increased number of donors is almost wholly attributable to the drug epidemic, and reflects the byproduct of a national tragedy, rather than an improved system to be celebrated.”

Next, Dunlap states the new metric will decertify 75% of OPOs. That is simply not true; rather, the new metrics establish a benchmark of achievable performance set by the top quartile of OPOs, within which the rest of the OPOs must perform to a degree of statistical significance. This is meant to address unexplainable variability in OPO performance – up to a 470% difference between the best and worst OPOs. In other words, if failing OPOs improve, they can keep their government contracts; if they don’t, their communities will be served by higher performing OPOs – a process rooted in decades of historical precedence that has never been disruptive. New Mexicans deserve a high-performing organ donation system, which can be N.M. Donor Services if it takes steps to improve.

Dunlap also argues criticisms of organizations like his are unfair because they are responsible not only for recovering organs, but also for finding a transplant center willing to accept them. This is a common responsibility across all OPOs; some manage this better than others, exactly why reforms compare OPOs against each other.

Finally, Dunlap protests that claims some OPOs “operate at a substandard level” is “offensive.” That is a perfect encapsulation of the problem; we should all care far more about the loss of life to our vulnerable patients than the fragile sensibilities of contractors who would prefer to remain unaccountable, especially as CEO salaries range as high as $2.5 million. Dunlap should clutch his pearls elsewhere.

The federal government has a right and a responsibility to set standards on behalf of patients. As someone who has watched loved ones languish on the transplant waiting list, Dunlap should know how traumatizing his fear-mongering is to patients he is trying to enlist in his defense. That is perhaps his gravest disservice of all.

Organ donation reforms have been finalized. To best serve families in New Mexico, Dunlap should focus his efforts on improving his organization’s performance and bringing more lifesaving organ transplants to vulnerable patients in need.

Organize, a patient advocacy nonprofit, was Innovator in Residence in the U.S. Department of Health and Human Services from 2015 to 2016.

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