First of its kind program makes organ transplants more accessible to disadvantaged Black Americans

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First-of-its kind program makes organ transplants more accessible to disadvantaged Black Americans

Over 50 patients have received kidney and liver transplants through program centering cultural competence, health literacy support and trust

• Racial inequities are well described, but few solutions have been designed to address problem
• Psychosocial support, trust, cultural similarity and health literacy are pillars of novel transplant access program
• Paper could support scientists looking to establish similar programs at other transplant centers

CHICAGO --- Black people in the United States are almost four times more likely to develop kidney failure and experience heart failure compared to white Americans, but they are much less likely to receive lifesaving transplants. In 2019, Northwestern Medicine created a novel and practical solution to this complex issue by redesigning the transplant access process for Black patients challenged by structural and institutional barriers.

The African American Transplant Access Program (AATAP) was the first of its kind nationally, but its founders hope the publication of a new paper in the New England Journal of Medicine Catalyst will propel the program into other transplant centers across the country looking to mitigate barriers many African American patients face. Since its inception, AATAP has supported nearly 300 patients, of whom 90 have gained access to the transplant waiting list with more than 50 receiving a kidney or liver transplant.

"AATAP has shown that with a thoughtful approach and a dedicated physician champion, we can provide access to transplant for patients who would otherwise be left behind," said Dr. Daniela P. Ladner, the study's senior author and a founding director of the Northwestern University Transplant Outcomes Research Collaborative (NUTORC).

Ladner is the John Benjamin Murphy Professor of Surgery at Northwestern University Feinberg School of Medicine and vice chair of research and innovation in the department of surgery. She also is a Northwestern Medicine surgeon-scientist.

Dr. Dinee C. Simpson is the founding director of AATAP and was the study's lead author. She is the chief health equity executive for the Northwestern health system and an associate professor of surgery in the transplant division at Feinberg. She said few solutions had been introduced since racial inequities were identified.

"It turns out that many of the structural and institutional barriers that put this population at risk for disease development are the very same barriers that make it more challenging for them to access a life-saving transplant," Simpson said. "AATAP represents the first program of its kind in the country to focus on the needs of Black Americans in this unique way. In the diverse city of Chicago, this program has shown to successfully facilitate access to transplantation for African American patients with kidney failure, who face barriers."

The paper describes AATAP from initiation to date and outlines a path forward for other transplant centers. AATAP supports patients who otherwise would not receive access to care but have "modifiable barriers to transplant access" relating to distrust, psychosocial challenges or poor health literacy. The goal, the authors note, is to support patients who demonstrate need, and is not an automatic assignment based on race - the majority of Black patients continue through usual transplant processes.

The physicians developed four pillars key to an African American transplant access program: psychosocial support (including transportation and access to social workers), trust (empathy, affirmation, visit length, lay language), cultural congruence (racial similarities with the care team and bias training for staff) and health literacy (educational material and a dedicated coach).

Responding to distrust of medical systems by building empathetic teams representative of the communities medical professionals serve is a critical component to successfully addressing racial inequities.

"Decades of research have consistently shown that Black patients are less likely to see a nephrologist for their kidney disease, less likely to be referred to a transplant center, less likely to be placed on the transplant waiting list and less likely to receive a life-saving kidney transplant," Ladner said.

A team of scientists that includes Simpson and Ladner were recently awarded a grant by the National Institutes of Health (NIH) to conduct a randomized controlled trial reproducing AATAP at a different transplant center to assess the integrity of the intervention.

The research was supported by the National Institute of Diabetes and Digestive and Kidney Diseases (grant number U01DK13725) of the NIH.