The fact that 2-year-old AJ Burgess desperately needs a kidney transplant has never been in dispute. Every day, the Atlanta toddler requires 10 hours of dialysis and five bladder treatments, all administered by his trained mother, Carmellia Burgess. Born prematurely without kidneys, and spending the first 10 months of his life in an intensive care unit, AJ recently sustained a stroke and is currently recovering from surgery to address a serious abdominal infection.
What is being disputed is the reason why the transplant has yet to occur. Originally scheduled for Oct. 3, the potentially lifesaving procedure was canceled by Emory University Hospital in Atlanta after it learned AJ’s donor and father, Anthony Dickerson, had committed a parole violation six days prior. Protests ensued over the following weeks, the family lawyered up and the story went national as Emory University Hospital was eventually forced to reprioritize the scheduling of AJ’s transplant.
While the situation appears to be mostly resolved — Emory appears committed to performing the procedure once AJ’s infection clears and Dickerson undergoes a medical reevaluation — what is still being questioned are the larger implications of such an extraordinary medical dispute. Given AJ’s family is both African-American and struggling to make ends meet, considerations of the intersecting issues of race, class, criminal justice and modern health care policy are to be expected.
“What we are witnessing is racism and classism that could leave a 2-year-old baby dead,” wrote community organizer and former Atlanta City Councilman Derrick Boazman in a statement prior to leading a late October protest at Emory.
The hospital’s subsequent response indirectly denied Boazman’s allegations. “It is important to note that race is never a factor,” read the Emory statement. As one of the top transplant programs in the nation, the hospital has performed more than 5,000 kidney transplants to date. In fact, continued the statement, “more than 50 percent of our kidney transplant patients are African-American. UNOS (United Network for Organ Sharing) policies, to which Emory adheres, have virtually eliminated ethnic disparities in the rate of kidney transplantation nationwide.”
In its initial transplant denial letter to the family, the hospital stated it would not proceed with the surgery until Dickerson proved compliance with the terms of his parole. “The Living Donor Transplant Team at Emory has asked Mr. Dickerson for evidence of compliance from his parole officer for the next three months. We will re-evaluate Mr. Dickerson in January 2018 after receipt of his completed documentation.”
“We were very concerned that the letter the father and mother received referenced, at all, any monitoring of his parole status or contact with the criminal justice system,” said Mawuli Davis, one of the family’s attorneys. “That, for us, raised a red flag.” In subsequent meetings with Emory officials, Davis said the hospital “acknowledged that that communication, and communication as a whole, broke down and that it should not have transpired that way. But based on what we received, obviously, we were very concerned that criminal justice is a factor.”
UNOS guidelines state potential donors are subject to “questions about any history of ‘high risk’ behaviors” and a “psychosocial and medical evaluation process” geared to “ensure success of the transplant” and its aftermath. However, a spokesman for the organization recently represented that there are no particular guidelines aimed at donors on parole or probation and that the final decision on transplants is made by the medical facility, and subject to UNOS review.
Some feel such subjective processes and medical bureaucracy can cover for or enable the type of systemic human bias that leads to both negative and disparate health care outcomes.
“The story of AJ and the obstacles his father faced in trying to save his life is the most egregious thing I think I’ve heard in terms of lack of common sense and concern for human life,” said Sara Totonchi, executive director of the Southern Center for Human Rights, a nonprofit law firm focused on criminal justice. “The criminal justice system disproportionately impacts communities of color,” stressed Totonchi, noting “there is no doubt in my mind that these racial disparities, combined with racial disparities in our health care system, can and do exacerbate extremely difficult situations faced by families and result in inequalities that could have tragic results for some of the most vulnerable members of our community.”
An August 2017 article in the American Journal of Nephrology stated that more than half the patients “awaiting kidney transplantation in the United States are ethnic minorities” with African-Americans constituting almost “33% of those on the waiting list.” Even with significant advancements in kidney transplantation, racial disparities still exist as African-Americans experience “longer time on the transplant waiting list, increased incidence of new-onset diabetes after transplant, lower access to live donor kidney transplant, and lower rates of graft survival” than their white counterparts.
While there are certainly a variety of factors contributing to this data, the racial realities of our modern society well justify a heightened scrutiny of such ongoing disparities.
“Living in America and dealing with so many issues that we deal with on a daily basis, I think it’s naïve for us to ever completely disregard the role that race plays in any decision, whether by an institution or individual,” said Davis, who is nonetheless optimistic that “things are back on track” with Emory and “Baby AJ.”
“We don’t have any concrete evidence of what motivated the writing of that letter or that communication [by Emory],” continued Davis. “But what we do know is we have to be ever mindful of the ways race, class and privilege play out in any of the institutions that impact our lives and our community.”