In an important win for patients, and health equity, the Department of Health and Human Services (HHS) recently finalized reforms targeted at the government contractors that run the organ donation system.
For decades, many organ procurement organizations (OPOs) have proven wildly inefficient, meaning that the wishes of many potential organ donors simply are not honored. These new regulations will—for the first time—allow HHS to hold OPOs accountable for their performance by putting their contracts on the line if the organizations don’t meet benchmark standards.
The implications of these reforms are profound: HHS projects that bringing all OPOs into compliance with the new minimum standards will save an additional 7,300 lives every year, which is why the changes have met with broad, bipartisan support. The co-chairs of the Kidney Caucus and Diabetes Caucus, the chair of the Congressional Black Caucus, and leaders of the Senate Finance Committee have all applauded the new reforms.
But while this has rightly been heralded as a win for good governance and patient safety, often lost is how these reforms will work to address racial inequities in access to health care for many of our most vulnerable patients. In few domains of health care is the unequal weighting of a Black life versus a White life so clear as in our organ donation system, in which the supply of a lifesaving treatment is insufficient to meet demand.
Inequity In Organ Donation
A new report supported by Arnold Ventures and Schmidt Futures makes this hard truth impossible to obscure, cataloguing research on inequities, delving into their root causes, and offering actionable solutions.
Despite near-universal support for organ donation in the United States, people of color, and Black people particularly, are systematically disadvantaged at every step of the system, all for reasons as unacceptable as they are rectifiable. The report also highlights outsize need in other communities of color, including among Hispanics, Native Americans, and Asian Americans, resulting from disproportionate disease burdens.
There are almost 110,000 Americans waiting for organ transplants, with the vast majority suffering from kidney failure. Black Americans are three times as likely to suffer from kidney failure as White Americans, yet are significantly less likely to be put on the transplant waitlist, as well as less likely to receive a lifesaving transplant even once they are.
While many factors contribute to this, we’ll focus on the one most immediately fixable: Too often, organ procurement organizations do not prioritize organ recovery from Black patients.
Since same-ethnicity donors and recipients are more likely to be clinical matches for transplant, fewer Black donors means fewer Black recipients, which means more Black deaths. The question, then, becomes: Why aren’t there more Black organ donors?
What Leads To Fewer Black Donors And Recipients
First, it is helpful to understand how organ donation happens. When a clinically qualifying death occurs in a hospital (for instance, as a result of traumas or opioid overdoses), the case is referred to an OPO, who works with the donor’s next of kin to obtain consent for donation and ultimately coordinate the recovery of organs for transplant.
But studies reveal massive inequity in this process. Black patients are less likely to be referred by hospital staff to OPOs, including as the result of guidance by OPOs to not call them in specific circumstances “to avoid reporting on cases when the OPO believes donation is unlikely.”
Even when the death is referred to the OPO, research shows that “[t]he odds that a family of a White patient was approached for donation were nearly twice those for a family of an African American,” running directly counter to the charge of OPOs to pursue every possible donor. When OPOs respond to cases involving Black families, research shows they provide wildly different levels of service than they do for White families.
Black families experience “less complete discussions about the possibility of organ donation,” and among the most common reasons they decline to donate are that the OPO did not “give [them] enough time to discuss important issues… or respond to [the family’s] strong emotion with sensitivity and empathy.” More simply, Black families are treated with far less compassion. This is significant, as families who have more contact with OPO staff are shown to be three times as likely to donate.
Black families’ experiences can be tied directly to OPO management choices, including hiring predominantly White work forces, and seemingly being unwilling or unable to adopt culturally competent practices.
In addition to decreasing the odds of Black transplant patients receiving a transplant, such inferior care also harms potential donor families. Research finds “[d]onation was seen as a powerful diversion from grief and provided ‘relief, tranquility and a sense of purpose’” to donor families, yet families of color are often denied equal access to that vital component of the bereavement process.
The obvious corollary to Black Lives Matter is that Black deaths need to matter, too.
Addressing Disparities Through Objective Standards
Some OPOs—including those based in Los Angeles, California; Georgia; Michigan; Memphis, Tennessee; and San Antonio, Texas, for example—are pushing for a race-based adjustment to performance. In effect, this would codify into regulation an expectation of substandard care for Black families, allowing OPOs to focus their resources largely on White patients. HHS, rightly, rejected such arguments, noting that “risk-adjusting for race could mask poorer performance, and we have concerns that racial risk-adjustments could perpetuate the stereotypes of different racial/ethnic groups and their willingness and ability to be organ donors.”
While combating racial bias in health care is no small undertaking, in the context of organ donation, a recent turnaround shows how rapidly disparities can be addressed. In December 2018, the regional organ procurement network based in San Francisco, California, which had been a chronic underperformer, hired the first Black CEO of an OPO in the country, who made it a priority to serve the community more inclusively.
Within just one year, the OPO increased its donation rates by 29 percent, driven by outsized increases in communities of color: a 40 percent increase in Hispanic donors; 70 percent increase in Black donors; and a staggering 95 percent increase in Asian donors.
The new OPO regulations bring the promise of systematizing such turnarounds. As one senior HHS official highlighted: “The most successful OPOs are high-performing because they are effective at serving the constituents within the geographic areas they serve. Conversely, if an OPO is deemed failing, this is highly likely to correlate with that OPO’s poor performance in communities of color.”
More simply: An OPO’s underperformance is often a very close proxy for its disparate treatment of communities of color. By moving to an objective standard for evaluating OPOs, however, OPOs can no longer choose—without consequence—not to approach certain families. As a practical matter, OPOs will have an incentive to invest more heavily in building relationships with hospitals that serve minority populations and in hiring a more diverse workforce.
Implement Reforms With Due Urgency
Astoundingly, many OPOs are calling for further delay of the new regulations, which would consign thousands of patients—mostly patients of color—to unnecessary death. If we understand the problem and know the solution, to withhold its implementation is cruel and senseless.
HHS needs to build further on this first critical step of accountability by ensuring that organ donation reforms continue in the Biden-Harris administration as part of its commitment to equity. Patient advocates have called for HHS to create a new, dedicated Office of Organ Policy to implement pro-patient reforms; that office should ensure as many Americans as possible have access to organ transplants, centering racial equity in all organ donation policy decisions and making sure that a patient’s ethnicity in no way limits the end-of-life decisions available to them.
There can be no righting of the wrongs of the past, but accountability and congressional oversight can ensure that, going forward, the organ donation system works for all patients.
Many problems are intractable, but a more high-functioning and just organ donation system is within our grasp and deserves unhesitating action and unrelenting focus.
