In March, the U.S. government set forth an ambitious and optimistically life-saving plan to overhaul the U.S. organ transplantation system—an overhaul that includes modernization of standards, processes, data collection, and reporting, while increasing competition and transparency within the system. The system revamp also includes a strategy to improve accountability, equity, and performance in the organ donation and transplantation system. Increased budget appropriation for 2024 is also included in the plan.
These changes seek to improve a system that has plagued multicultural communities, particularly African American/Black families through inherent racism and inequity. These families, families like mine, have had loved ones linger on the organ transplant waitlist and too often die still waiting—most often waiting for kidneys.
This update to the transplantation system, therefore, is welcome news to many African American/Black families. Ideally it will be a step toward equity, transparency, and increased communication. A step toward saving lives. Lives like those that make up my family.
Black patients face greater risks and barriers to care
Despite making up only 13% of the U.S. population, according to the U.S. Organ Procurement and Transplantation Network (OPTN), African American/Black persons make up nearly 30% of individuals on the organ transplant waiting list. Nearly 90% of those African American/Black persons on the waiting list need kidneys.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) states, as reported by the U.S. Renal Data System, USRDS 2022 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, African Americans are almost four times as likely as whites to develop kidney failure, and they account for 35% of the people with kidney failure in the United States.
The U.S. government’s announcement is quite timely. March is National Kidney Month and April is Minority Health Month—both months serve as reminders about the health disparities African American/Black families face in the U.S. as it relates to kidney health.
When I look across my family tree, I see tell-tale signs that dot those of many other African American/Black families. We have connections to the Diaspora. We have proud historically black college and university (HBCU) graduates. We have a cadre of entrepreneurs, inventors, scientists, and public servants. And my tree also has branches marked by family members who live with and have died from chronic disease, including cardiovascular disease, diabetes, hypertension, kidney disease, and cancer.
My family tree is like many extended Black families in that there are numerous members—on both sides—who have fought chronic kidney disease, most often caused by years of poorly managed diabetes and hypertension. And most often unsuccessfully. This leads them to dialysis and quests for kidney transplants.
African Americans are at high risk for kidney failure due in part to high rates of diabetes and high blood pressure. Research also has discovered a genetic predisposition to kidney disease for some people with Western African ancestry. It is well established that racism can have a direct impact on health—such as blood pressure—by elevating daily stressors and micro-aggressions. In addition, the social and economic factors associated with racism create barriers to access to healthful foods and physical activity that increase the likelihood of diabetes. Racial discrimination also affects access to high quality and affordable care.
Putting people at the center of the issue
However, the data only tells one part of the story. Behind every percentage point, there’s a person. A mother. A grandfather. A daughter. A cousin. And an uncle. All of them try to manage their health while attempting to overcome their inherited gene variants, address environmental and social factors that make up the social determinants, and fight systemic racism in public health and the healthcare industry.
In Black families, having a family member on dialysis due to kidney failure and end stage renal disease (ESRD) is not uncommon. We all know someone who has been on these blood filtering machines. There’s no ignoring the dialysis centers that are sprinkled across predominantly Black neighborhoods. About a decade ago, I had both an uncle on my dad’s side and an aunt on my mom’s side on dialysis. At the same time. Neither received a kidney transplant. Both died due to ESRD-, diabetes- and heart-related complications.
Just as in my extended family, far too often, these family members don’t get the organ they desperately need. According to a study funded by the National Institutes of Health (NIH) and NIDDK, “racial disparity in kidney transplant wait-listing persisted even after adjusting for medical factors and social determinants of health.” According to the study, while there are disparities at all stages of the process from referral to transplantation, geography, insurance type, and socio-economic status all impacted a Black person’s ability to receive a kidney transplant even after being referred for one. Simply put, once on a waiting list, Black patients often end up waiting longer than white patients for a kidney transplant.
The organ transplantation overhaul seeks to address this disparity.
According to the Health Resources Services Administration (HRSA) and OPTN data as of October 31, 2022, although the total number of non-Hispanic whites on organ transplant waiting lists is about 1.4 times greater than that of non-Hispanic Black persons, the number of candidates waiting for a kidney transplant is almost the same between non-Hispanic Black persons and non-Hispanic whites. So why are Black patients denied these transplants that can help them live longer?
This past summer, the OPTN approved a new requirement to calculate and interpret medical test results differently than have been done in the past. This is designed to change the calculations to determine how Black people’s kidneys are reportedly functioning. This could remove race from the kidney transplant equation. It could change the determination for when a patient qualifies to be put on the transplant waiting list. It could help Black patients get on the list sooner.
In short, it could save Black lives. It could change the dynamic of my family tree.
Working to advance public health
For many years, I have worked to help educate families like mine about their risk for kidney disease. Many years ago, I worked on behalf of the NIDDK to develop education and outreach materials. At ICF, I have continued to support the Centers for Disease Control and Prevention and NIH’s National Heart, Lung, and Blood Institute separately to educate African American and Black families about the importance of preventing diabetes and hypertension, respectively. And for those who already have these conditions, I’ve worked to develop messages and materials to help them manage the diseases as best they can to prevent complications and keep their kidneys healthier longer.
Understanding how to better manage type 2 diabetes, prevent type 2 diabetes diagnoses, address obesity, and learning to make healthier lifestyle changes will help African American/Black persons address health disparities. This education and outreach, combined with the modernization of data systems—such as the data registry modernization work my ICF colleagues support for the Centers for Medicare & Medicaid Services—will help not only deliver better health outcomes, but also improve our federal agencies’ abilities to advance public health.