But these were not the only factors that mattered. Psychosocial considerations, such as whether a patient lacked strong support at home or had a record of missed appointments, were viewed as equally important. And in contrast to the evidence underpinning the medical criteria, these metrics were more subjective, influenced by what Dr. Pavlakis described to me as “gestalt and some anecdotes.”
Dr. Keren Ladin, an associate professor at Tufts University, spent years sitting in on transplant meetings like this one to better understand the impact of nonmedical criteria on who gets listed. To deconstruct the process, Dr. Ladin, who is also the chair of the United Network on Organ Sharing Ethics Committee, coded the language used to make these decisions and communicate them to patients. She focused in particular on the requirement for social support, which she believes is “a bigger part of inequities in access to transplant than people think.”
Social-support requirements vary based on the intensity of the surgery and the length of the required rehabilitation. But in general, a patient is expected to have one to three people who can commit to helping in recovery — driving to appointments, managing medications or responding to overnight emergencies. In a health care system that does not guarantee these sorts of services for patients,the responsibility falls to family and friends. As a result, lower-income patients may be less likely to meet the requirements for robust social support because their loved ones often can’t afford to leave their jobs or they already care for other family members. This difficult reality can disqualify someone from receiving an organ, even though there is only tenuous evidence that social support — as transplant programs define it — is necessary for success after transplant.
Of course, most patients will need help after transplant. But Dr. Ladin pointed me to an analysis of existing studies that found only a weak and inconsistent relationship between social support and medication adherence or survival after transplant. Marital status, for example, was not significantly associated with transplant success. Nevertheless, a nationwide survey of more than 500 transplant providers estimated that nearly one in 10 candidates for transplant were deemed ineligible because of inadequate social support. A majority of the providers surveyed said they felt that the support criteria disproportionately affected patients with lower socioeconomic status.
Transplant committees’ subjective sense of who is “likable” can also affect whom the team is willing to advocate and whom they are not. Dr. Dinee Simpson, a transplant surgeon at Northwestern Medicine in Chicago, recalled a troubling example from a committee meeting early in her surgical training. A Black man whose personality had “clashed with many providers” was being evaluated for kidney transplant. By all objective measures, she remembered, the patient seemed to be a good candidate. Then someone mentioned that he had a long fingernail on his little finger, which the person believed was an indication of cocaine use. The team ultimately decided not to list the man for a transplant. “I cannot believe I witnessed that,” Dr. Simpson recalled thinking. “Something needs to change.”
Now, decades later, Dr. Simpson is making that change, as the first Black female transplant surgeon in Illinois, where she founded and directs the African American Transplant Access Program at Northwestern University. In developing the program, Dr. Simpson worked to counter the distrust of the medical system that is prevalent in the Black community: Since studies show that racial concordance between patients and clinicians can improve trust and communication, she meets with all patients herself, giving them time to tell their stories and explaining the transplant process without using medical jargon. She has also hired a Black social worker and a health literacy coach. When it comes to the evaluation, the team brings a diversity of voices and viewpoints to the transplant committee that’s lacking at many institutions. As a result, in the two years since the program started, Dr. Simpson said, the number of Black patients listed for kidney transplant at the center has increased by 18 percent.
This fall, Dr. Simpson performed a kidney transplant on a 45-year-old woman who had been declined for transplant at two other medical centers. The patient’s kidneys failed 13 years before, during pregnancy, leaving her tethered to dialysis. A single mother, she often had to choose between dialysis sessions and parental responsibilities — taking her children to their own doctor appointments and attending parent-teacher conferences. As a result of those kinds of needs, she skipped dialysis from time to time, a decision that earned her a label of “noncompliant.”