Advocating for equity in kidney care
Roberts is the Director of External Relations and Patient Engagement for the UW Kidney Research Institute and Chief Strategy and Operations Officer for UW Justice, Equity, Diversity, and Inclusion Center for Transformative Research.
She was also the recipient of a kidney transplant in 2010.
Her personal experience with kidney disease has driven her professional passion for advocating for kidney research and patient-centered care.
Roberts currently serves on the National Kidney Foundation (NKF)-American Society of Nephrology (ASN) Task Force charged with reassessing the use of race in diagnosing kidney disease.
The typical approach for diagnosing/monitoring kidney disease is to measure the levels of creatinine in a patient’s urine sample, resulting in an estimated glomerular filtration rate (eGFR). The eGFR is often calculated using the Modification of Diet in Renal Disease (MDRD) equation which factors in a patient’s race in order to determine an eGFR measurement.
The MDRD has been found to over-estimate kidney function in Black patients, resulting in numerous adverse outcomes including delayed access to dialysis and placement on the transplant list. The Washington Post recently published a story describing the implications of this disparity for Black patients and features Roberts’ experience as a kidney-disease patient and professional.
“It really makes you wonder what the benefit is of having an equation that will cause people who look like me — Black people — to get referrals later, to have to wait longer before you can get on the transplant list, but then have your disease progress more rapidly,” Roberts is quoted in the Washington Post article.
Noting the imprecision and inequity associated with the race co-efficient in the equation, UW Medicine stopped using the MDRD for measuring kidney function in the summer of 2020.
The use of race in diagnosing kidney disease
Roberts is one of two patients (and the only member from the University of Washington) on the 14-member national task force on Reassessing the Inclusion of Race in Diagnosing Kidney Diseases, and the task force has just published their final report, which outlines a new race-free approach to diagnose kidney disease.
After a year of interviews with the key stakeholders, data analysis and computation, the task force recommendation (and the American Society of Nephrology and Northwest Kidney Foundation's acceptance) makes Nephrology the first medical subspecialty to formally request that race be removed from its medical algorithm.
“As a person living with kidney disease, this report is important because it has raised awareness about the prevalence of kidney disease; it emphasizes the importance and benefits of early screening; and it stresses the need for ongoing research so that patients and health care providers will continue to learn more,” she says. “While many medicine specialties continue to include race in medical equations, we know race is a social construct, not a biological construct, and I think that it's exciting that Nephrology is the first medical subspecialty to recommend that we abandon these antiquated racial norms, while upholding scientific rigor and framing our approach around social responsibility and the acknowledgment of the multi-cultural nature of many US citizens.
Most patients talk about "my eGFR" as though this estimate of kidney function is a precise measure. I hope that this report will help educate patients and influence how doctors discuss (1) what eGFR really is and (2) what its limitations are relative to the individual patient's kidney function.”