The Black and White of B’ing Positive: An Outlier Story of Kidney Donation

Steven Dye and Jaime Crawford chat as they are prepped for the transplant surgery. (Photo credit: Scott D. Crawford)

My wife, Jaime, settled in on the corner cushion and pulled a waiting quilt across her legs. I eased back into the recliner next to her—my own nightly wind-down position back in 2017 before it also became my work position during the COVID-19 pandemic.

Jaime spoke first. “Steven’s kidneys are failing, so I’m going to get tested to see if I’m a match.” She looked at me, awaiting my response. My brain scrambled to make sense of this report.

Steven, her co-worker, needed a new kidney. I strained.

The test would determine if she was a match. The idea emerged. My brain creaked. My eyes squinted as if they were holding something in.

She was considering donating a kidney to Steven!

Steven Dye was born and raised in Ann Arbor, Michigan. His father was a local Ann Arbor cop, and his mother, the Director of Multi-Racial Education in Housing at the University of Michigan. Steven followed his father’s career and eventually wore his same badge, #94, after joining the Ann Arbor Police Department in 1999. Jaime and Steven met while working patrol.

“Wow,” I replied, already doing the math that I was wholly unqualified to do, estimating the chances that she would be a match.

She said, “Our blood type matches—B positive.” I recalculated the odds.

Be positive indeed, I thought. While listed as an organ donor on my driver’s license, I had never considered donating an organ while still alive. Jaime shared more: “He wants to start a family. It will be hard to do while on dialysis.”

Steven, Rayna, and Sophie Dye in a recent family portrait. (Photo courtesy: Steven Dye)

I knew she was doing the right thing—but I couldn’t imagine having to make that decision myself.

What led to this moment started in 2007—Steven asked his doctor about diabetes, as he knew it ran in his family. A test assured him that he did not have diabetes, but he was shocked to learn that he did have stage 2 kidney disease. He started medication and enrolled in a study of kidney disease in which he received annual check-ups and extensive blood tests in addition to what his doctor provided.

Soon he started experiencing symptoms. He was tired, had a sustained thirst, and peed a lot. Then, in early 2018 following a study check-up, he received an urgent call. The direction was clear: “Hey, you should call your doctor ASAP.”

He learned he had only 10 percent kidney function. The health care team told him that if he dropped to 8 percent, they would start dialysis. Steven joined the kidney transplant waiting list.

In the US, there are 90,200 stories like Steven’s. Kidney disease can affect anyone, but while Black Americans represent 13 percent of the overall population, they make up nearly one-third of the patients on the kidney donation waiting list.

The Organ Procurement and Transplantation Network (OPTN) was established under the National Organ Transplant Act in 1984. The US Department of Health and Human Services (HHS) manages the list. Through a contract, the list is operated by a private non-profit called the United Network for Organ Sharing (UNOS). The kidney transplant list includes a record of every person who has ever waited for, donated, or received a kidney since October 1987. There are so many, it is difficult sometimes to remember that behind each one is a human story—an experience that is more than a single value.

The average case on the kidney transplant waiting list has been there for one to two years. The current list includes 13,181 who have waited for five or more years. Fifteen percent of all Black patients on the list have been there for over five years—a rate that is 45 percent higher than for white patients.

These disparities do not go unnoticed by the OPTN. These data are open to the public and presented in standard reports for immediate access online. For data nerds like myself, one can request and receive a complete set of all waitlists, transplants, and list removals for kidneys since the OPTN started in 1987. I received my data request for this treasure in under four days.

While disparities in organ donations may reflect more significant societal inequities and not always issues with the list itself, the results from numerous studies conducted using the data showed the flaws in how the system allocated kidneys in the first decade of its use. In 2014, the OPTN modified its rules in response to such studies to increase equity and reduce wasted kidneys.

The 2014 changes helped, but further research shows that white patients are more likely to receive kidneys than minorities, even with comparable kidney function and time on the list. Black patients temporarily removed from active status for various reasons (such as allowing them to address another pressing health concern like cancer) are less likely than white patients to regain active status on the list. In February 2021, OPTN changed its policies again. The focus of these current changes is to reduce disparities related to geographic inequality. The old system used geographic service areas to identify candidates for donation, placing artificial barriers between recipients in need and the available organs. The new system uses the distance between the donor and transplant hospital to prioritize donations when they become available. It is too early to see any effects of this change.

In arriving at 10 percent kidney function, Steven faced a decision: accept going on dialysis, a standard process of performing your kidney function externally by machine, or find a kidney fast. There is no way to speed up the waitlist. 

Steven saw this as a quality-of-life moment. With home dialysis, he could plug in nightly, but on his working days, this would mean that he could do little else after a long shift. He wanted to stay engaged with life. He and his wife, Rayna, wanted to have children.

Steven started having this conversation with others—first, his family, then co-workers, and friends. He recalled talking with one friend for at least an hour before he laid out his request to get tested.

He was surprised by the reception.

“There are great people in this world who are willing to [donate a kidney],” he said, “and to make such a major sacrifice for me.”

My wife was one such person. After a full day of testing at the University of Michigan Medical Center, Jaime had her moment of decision. She was a match. Due to privacy laws, if Jaime decided to proceed, the medical team could not tell Steven that she was the donor. And at this point, Steven would not know if she were to back out—instead, the medical team would report that the potential donor wasn’t a good match.

Once she consulted with the medical staff and a donor advocate assigned to protect her rights, the decision was simple. She would proceed, but she wanted to talk with Steven first.

She recalled telling Steven the news of the match. The two of them soaked in the moment. She asked him to promise to take care of her kidney. He promised that he would.

So far this year, 19,307 stories have been removed from the kidney transplant waiting list—on track to match previous years’ totals. Thirteen percent of Black patients were removed from the list because they died waiting. Eleven percent of white patients were removed with a similar fate.

Kidney donations can come from deceased or living donors. Live donations come from individuals who have very healthy kidney function and can give up a kidney without a significant impact on their health. Most often, it is a family member or close friend who donates.

A stark area of disparity remains highlighted by the data, but it is one that may need a societal shift well beyond the management of a waiting list. Only 10 percent of all Black stories that resulted in a transplant received their transplant from a live donor. White stories resulted in 35 percent of transplants coming from live donors .

On March 27, 2018, Steven became an outlier when he received a live donation from Jaime. His name was removed from the waiting list. Both recovered well and remain healthy today.

Steven acknowledges that the health care experience of Black patients in the United States is fraught with trouble. He raised old distrust from the Tuskegee Study (where Black males were kept from treatment for syphilis), and he mentioned modern-day inequities of Black women being more likely to die during childbirth.

These thoughts didn’t cross Steven’s mind, though, when he was experiencing kidney disease and seeking a kidney transplant. “Being a man of faith,” he said, “I’d never really worried or stressed. I didn’t know how things were going to come together, but I wasn’t worried about it.”

But there was one other time he considered the Black experience with the medical field recently. “I thought about it,” he said, “when [my wife and I] went to the hospital to deliver Sophie.” 

On January 6 of this year, Steven and Rayna Dye became the parents of a healthy little girl, Sophie Marie Dye.

Transplant stories of deceased donors often speak of the emergence of life from the dead. With Jaime’s donation to Steven, life came from one who is living.

It is unknown if Sophie inherited Steven’s blood type, but I do know that he will have an opportunity to teach her how to B positive and carry his same faith.