Program aims to address inequities in transplant among Black patients
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SCOTTSDALE, Ariz. — A program in Chicago is helping historically underrepresented groups gain improved access to a kidney transplant, a presenter said here.
The aim of the Northwestern Medicine African American Transplant Access Program (AATAP), led by transplant surgeon Dinee C. Simpson, MD, FACS, is “to break down barriers to transplant care in the African American community through access to education, resources and quality transplant care,” according to the AATAP website. Simpson, the first Black female transplant surgeon in Illinois, founded the program to address disparity in access to transplantation experienced by the Black community.
“Black patients are less likely to be informed of risk and screened for kidney disease,” Simpson said in a presentation at the Cutting Edge of Transplantation Summit. “Black patients have lower referrals to nephrologists and to transplant, and they are less likely to complete an evaluation for listing, less likely to be active on the list and once active, they wait longer [for a transplant],” Simpson said. “And they are less likely to have living-related donors.”
Simpson said much of this inequity occurs because of racism. “I know racism is a ‘charged’ word,” she told attendees. “The pathway involves many steps to get to a transplant ... [T]here is a large group of people who need access to a transplant, and as we move along this pathway, there is attrition and people fall off.
“They fall off because of structural racism, institutional racism and even internalized racism,” she said. “So, what we end up with at the end is a small group of patients who make it to transplant.
“The AATAP is designed to reduce that attrition along the pathway and get patients over to transplant.”
Definitions of racism
Simpson offered several definitions of racism that can influence the likelihood of whether a Black patient gains access to a transplant.
“Interpersonal racism is prejudice and racial discrimination with intention to harm a particular individual or group,” Simpson said. “That’s not what we are talking about here. Here we are talking more about institutional, structural and internalized racism.”
Institutional racism involves policies and practices implemented by institutions that, intentional or not, produce outcomes that will always favor a particular group, Simpson said. Structural racism is discrimination against certain groups through policies affecting housing, education, income, health care and criminal justice that reinforce discriminatory beliefs and values.
Internalized racism is when individuals accept negative messages by a stigmatized racial group that leads to self-devaluation, Simpson said. “It comes about when individuals accept the negative messaging that they get from being the subject of structural and interpersonal racism ... and they feel they are not worth better care,” she said.
Transplant professionals can help patients rebuild trust in the health care system, which is “a huge factor particularly for African American patients,” Simpson said. Other areas that need focus include health literacy and diet, she said.
Social vulnerability
A key focus of AATAP is to help identify areas of Chicago where patients have high social vulnerability, Simpson said, so that psychosocial help can be directed effectively. “Psychosocial support is something that is required for all transplant centers,” Simpson said. “We looked to where the social vulnerability index is highest, and it overlies a lot of our minority communities, which is not surprising.”
The key to helping vulnerable patients lies in modifying barriers to transplant, Simpson said. “We need to change the mindset from ‘how do we clean up the list’ to ‘how do we change these patients to transplant candidates,’” she said. “By addressing disparities, all patients benefit.”
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Simpson DC. Strategies to overcome candidate barriers to active waiting list status and/or transplant readiness. Presented at: Cutting Edge of Transplantation Summit. Feb. 23-25, 2023; Scottsdale, Ariz.
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