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Don’t let the COVID-19 crisis delay reforms to our organ transplant system

Vulnerable patients of color deserve better

A nurse attends to a COVID-19 patient who is on dialysis at Desert Cities Dialysis in Victorville, Calif. in April. Congress and federal regulators cannot let up on reforms that are so close to helping such vulnerable patients, Jealous writes.
A nurse attends to a COVID-19 patient who is on dialysis at Desert Cities Dialysis in Victorville, Calif. in April. Congress and federal regulators cannot let up on reforms that are so close to helping such vulnerable patients, Jealous writes. (Irfan Khan / Los Angeles Times via Getty Images file photo)

In the COVID-19 crisis, there is a community that is particularly at risk: people who are on dialysis because their kidneys have ceased to function. There are nearly 500,000 Americans on dialysis today, who represent one of the most vulnerable populations in the country. Many of them are languishing in dialysis centers because we fail to recover thousands of kidneys each year that could get these patients a lifesaving organ transplant.

Kidney disease affects an estimated 37 million Americans, with African Americans three times more likely to suffer from end-stage renal disease than white Americans. So, like far too many people across the country, I’ve seen firsthand the toll kidney failure can take, and have lost people I love to it.

My mentor, Bill Lynch, was the deputy mayor of New York City and a legendary organizer who advised Nelson Mandela on South Africa’s transition from apartheid. I used to sit with him in his house in Harlem while he did dialysis, regaled me with stories and imparted his wisdom — all until he passed away from kidney complications in 2013.

Bill may have been special, but nothing about his case was unique; tragically, 13 Americans die each day waiting for a kidney transplant.

But what’s most heartbreaking is that this loss is often needless. Research shows that our organ donation system fails to recover as many as 17,000 transplantable kidneys every year from deceased organ donors — as well as 11,000 hearts, lungs, livers and pancreases. 

A key barrier for patients in need of organ transplants is the network of government monopoly contractors, called organ procurement organizations, or OPOs, which are responsible for showing up at the hospital and recovering transplantable organs. For decades, these contractors have been grossly inefficient and operated with no accountability. 

A proposal from the Department of Health and Human Services noted that a majority of OPOs were failing minimum compliance standards, and seeks to transform the way OPOs are evaluated. So rather than continuing to deny the problem entirely, OPOs are now resorting to blaming others for their failures — and pointing their fingers directly at communities of color.

Consider the Los Angeles OPO. It recovers just three out of ten potential donors, and has been forced to return taxpayer dollars it spent improperly on personal perks such as luxury hotels and football tickets. And its formal response to HHS’ new accountability proposal is deeply concerning: Its poor performance is not its fault because it serves a “population that is substantially non-white.”

For years, providers across all aspects of health care have blamed patients of color for their health outcomes, ignoring the reality that we often receive differential treatment as a result of implicit — and sometimes explicit — biases. 

So while donation rates are lower among people of color versus white communities, it’s not because of some inherent lack of generosity; the real problem is that too often these government contractors do not engage with our communities. They hire blindingly white work forces, and seem completely unwilling or unable to adopt culturally competent practices. 

OPOs cannot decide that they only have to provide higher quality service for white populations. People of color are their constituents too; we are not their shield. OPOs don’t need a scapegoat, they need a mirror.

And not only is the argument of the Los Angeles OPO offensive, it also systemically disadvantages the nearly 67,000 nonwhite patients currently on the waiting list for transplants. Because a donor’s organs are more likely to be a clinical match for a recipient of the same ethnicity, holding OPOs to lower performance standards from donors of color means patients of color are less likely to receive lifesaving transplants when we need them. 

According to the federal government’s Office of Minority Health, while 48 percent of white Americans on the waiting list received a transplant in 2019, that same number was only 26 percent for Black Americans on the list and 29 percent for Hispanic Americans. To give credence to these OPO excuses about serving communities of color is to codify inequity into the health care system.

Even in a hyperpartisan Congress, Sens. Chuck Grassley, R-Iowa, and Ron Wyden, D-Ore., led a powerful oversight letter from the Senate Finance Committee that promises to finally expose the rampant graft in the OPO industry, and Rep. Karen Bass, D-Calif., chairwoman of the Congressional Black Caucus, recently weighed in with her support.

OPOs have recently lobbied the leadership of HHS to weaken the proposed standards, asking that the regulatory changes not be finalized during this public health emergency. Astoundingly they are also asking that the new standards not be implemented until 2026, during which time tens of thousands more patients — disproportionately people of color — would die.

Congress and federal regulators cannot let up on reforms that are so close to helping patients, especially with so many dialysis patients living in mortal fear of COVID-19 transmission. We need OPOs to be held truly accountable — for all of us. 

Ben Jealous is the former president and CEO of the NAACP.