The organ procurement system is failing people of color like me. It’s time for reform

I am a Black woman who has been waiting for seven years for a kidney transplant. The organ procurement system has failed me — apparently by design.

In December 2021, a federal judge ordered that official policymaking emails from the United Network for Organ Sharing (UNOS), the government contractor in charge of overseeing the organ donation system, be unsealed. The organization is the subject of an ongoing bipartisan investigation by the Senate Finance Committee.

In justifying a new policy that would systemically disadvantage people of color based on where they live, then-UNOS board member Alexandra Glazier wrote: “The fact that some states do better than others in preventing preventable deaths and providing health care insurance coverage and access means you’re a dumb f— for living there.”

I grew up in rural Kentucky, one of the states Glazier referred to. As a toddler, I was diagnosed with a rare kidney cancer that devastated my left kidney. At age 17, I needed my first kidney transplant. At age 25, I went back into complete kidney failure as a result of chemotherapy and genetic kidney disease, and have been waiting for a second transplant ever since.

I understand the stakes intimately, having already lost five relatives to kidney failure. What’s keeping me alive is dialysis, a blood-cleaning procedure I need four days a week for four grueling hours at a time. As a long-term effect of dialysis, I now experience nerve pain flare-ups so severe I can barely walk, and my blood pressure spikes or falls enough to make me dizzy or be seized by fits of vomiting. Earlier this year, I learned that as a result of complications arising from fluid overload from dialysis I may now need a heart transplant, too.

I can’t ever miss dialysis, or the consequences would be fatal. I couldn’t miss it while putting myself through college, or while preparing for medical school in an effort to take my fate into my own hands, or while testifying before the Congressional House Oversight Committee about how deeply inequitable America’s organ donation system is.

Glazier’s animus for people like me is palpable. But the reason it’s so hard for me to get a kidney transplant isn’t, I assure you, due to any of my own limitations. I’ve done everything asked of me, and even won an Excellence in Kidney Disease Education award from the National Kidney Foundation for volunteer work in my community.

The problem is that the federal contractors charged with recovering organs — called organ procurement organizations (OPOs) — are failing to recover as many as 28,000 transplantable organs every year.

Glazier should know this because she runs the organ procurement organization based in Massachusetts which, according to data released this week by the federal government, is among the worst-performing OPOs in the country. It is also one of several currently under congressional investigation for “gross mismanagement,” possible conflicts of interest and misuse of funds, and what Rep. Katie Porter (D-Calif.) has characterized as “patient abuse.”

These harms — like so many harms — are borne disproportionately by patients of color, because organ procurement organizations provide them with deeply inferior patient care.

For example, despite a legal requirement to respond to all organ donation referrals, organ procurement organizations are only half as likely to even respond to a hospital’s call when the potential donor is Black. Organ procurement organizations exhibit far less compassion to Black families about donating a loved one’s organs, resulting in an eye-popping tenfold difference across these organizations in their rates of organ recovery from Black donors with similar — and equally inexplicable — disparities found in their service of Hispanic and Asian communities.

This racially biased provision of vital health care services by federally funded contractors results in far too few organs available for Black people and other people of color who need them.

It doesn’t have to be this way. Bipartisan reforms to hold organ procurement organizations accountable have been championed by equity leaders such as past NAACP president Ben Jealous and then-chair of the Congressional Black Caucus, Rep. Karen Bass (D-Calif.).

In response, however, organ procurement organizations have increased their lobbying expenditures by more than 500% since 2017, and some have even attempted to obstruct the congressional investigation into them.

And when Covid-19 — which heightened the need for organ transplants — emerged, one OPO executive was even caught on tape celebrating how “fortunate” their organizations were because the deadly pandemic gave them more time to organize a “real congressional action campaign” to block impending reforms.

Knowing all of this, Glazier’s unsealed emails, with her words of contempt for vulnerable communities, hit even harder. She and I haven’t merely disagreed on policy; we’ve disagreed on my very worthiness.

But my next reaction to seeing the emails was relief: Maybe this will finally be the catalyst for Congress to step in and pursue the reforms needed to ensure accountability for the federal government’s organ procurement contractors so thousands more organs are recovered and transplanted each year. It may be the only hope for people like me.

LaQuayia Goldring is a pre-med student at the University of Louisville with a focus on health disparities and patient advocacy. She reports being a volunteer for Organize, a nonprofit organization funded by Arnold Ventures to improve the performance of organ procurement organizations.