NSMC Intern Nathaniel Reisinger summarizes chapter four.
This chapter contrasts Dr. Grubbs’ “My Robert” to “The Other Robert Phillips.” Their dichotomy serves as a digression point leading the reader to an important discussion recapitulating the stark disparities in ESKD in America.
It is no coincidence that the Disparities in Nephrology Region is the reigning NephMadness champion. These issues weigh on our collective conscience as a nation. Those self-identifying as Black or African American represent 13% of the population in the most recent census, but are more than one third of all dialysis patients. What is more, Dr. Grubbs informs us that Whites represent only a third of dialysis patients but receive 50% of donated kidneys, while Blacks receive about 20% and wait on average 2 years longer for a transplant.
The Other Robert Phillips received a transplant after about a month of dialysis. Remarkably his donated kidney lasted 58 years until he died with a functioning graft despite an ABO mismatch. We contrast this with the obstacles and setbacks that Dr. Grubbs’ Robert faces that mirror those facing Blacks nationwide who are less likely than Whites to be referred for transplant evaluation, complete a transplant workup, be deemed appropriate candidate for transplant, placed on a waiting list, and undergo transplantation.
We empathize with Robert’s struggles dealing with conflicting information and navigating a system that is stacked against him. “‘The kidney transplant system doesn’t like Black people.’” We already know that Robert’s dialysis care was suboptimal. He spent 2 years with a catheter before getting a fistula, exposing him to potentially life-threatening blood-stream infections. Now we learn that he never heard about the option of a transplant despite years of pre-dialysis care. He was not preemptively listed and, adding insult to injury, he is not even referred for transplant evaluation until after a full year on dialysis.
Part of the disparity appears to arise from the lack of bond between patient and doctor. Patients need to feel that their nephrologist is working in their best interest and nephrologists need to feel that their patient can be trusted to take care of the donor kidney once transplanted to ensure proper allocation of a scarce resource. Throughout the book we have unique insights into how Robert thinks and feels about his nephrologists. In this chapter we see first-hand through Dr. Grubbs’ eyes what is tantamount to institutional racism in the transplant system. Dr. Grubbs and Robert bear the brunt of factual, but at best unhelpful, remarks from the financial counselor, the nurse, and even the transplant nephrologist.
Seeing the way Robert is treated, the mechanism of disparity is revealed. It is no wonder that he has trouble visualizing the process. While the providers may be well-intentioned, providers miss the bigger picture that regardless of race, patients with ESKD have better outcomes with a kidney transplant. Similar tactics were seen in the recent John Oliver exposé of practices of the United States’ second largest dialysis organization. Transplant counselors were recorded telling patients that not everyone chooses a transplant, some choose to stay in the dialysis community. Again, factually correct, but dilatory in intention.
Nephrologists and support personnel must work hard to be seen as patient advocates for disadvantaged minorities. There is history there. A legacy of systematic exploitation of Blacks in this country has led to a deep distrust of institutions including doctors appearing well-intentioned. Thus, there is an imperative for nephrologists and the entirety of the transplant system to act as strong, proactive advocates for minority populations.
Dr. Grubbs herself serves as an excellent foil to Robert’s transplant nephrologist in her treatment of a patient she calls The Book of Eli. She helps him navigate the transplant world, circumventing an eGFR measurement that is itself stacked against him. This allows him to be preemptively listed. Their patient-doctor interaction is instructive. Helping patients overcome disparities inherent in the system helps fulfill the nephrologist’s half of the doctor-patient covenant. It is a gesture of goodwill that patients see and will pay dividends in terms of patient adherence.
There are not enough nephrologists like Dr. Grubbs. Putting aside her clinical acumen and strong patient advocacy, more Black doctors are needed. It is well-described that better personal care and higher levels of trust exist when the race of patient is the same as that of the physician. This is particularly prescient in nephrology where Blacks make up 35% of dialysis patients versus only 7% of nephrology fellows.
In a world where police violence against Blacks is a daily news headline it is surprising that stories about disparities in dialysis and transplant are not more prominent. Renal disease ought to be a defining issue of race on a national level. The Medicare ESRD benefit represents the only disease-specific healthcare entitlement and its $33 billion budget represents nearly 1% of the entire federal budget. How effectively this money is deployed is of critical importance to the health and well-being of Black patients and Black communities. Outcomes like Monsor’s dying in the street (a dialysis patient that is friends with Robert) ought to outrage just as much as any violation of civil rights. It is crucial that we as nephrologists serve as advocates in our workplaces and in Washington, both for our patients, but for the community as a whole.