The Atlantic brought together 37 speakers for a virtual summit on June 22 to discuss racial divides in health, the COVID-19 pandemic's disproportionate impact on communities of color, and strategies to improve health outcomes for Americans across race, age, gender and sexual orientation. Speakers included health professionals, community members, journalists and nonprofit leaders who have strived to build more affordable and inclusive health systems.
LaVarne Burton, American Kidney Fund President and CEO, participated in a panel discussion on "The Power of Patient Advocacy." She discussed the need to address the disproportionate impact of kidney disease on communities of color, listen to diverse groups of patients about their experiences and correct longstanding racial biases in kidney disease detection.
"Kidney disease… develops over a long period of time. And when you look at chronic kidney disease, which is where it begins, there is not the kind of disproportionate impact on people of color. It's as you progress to a worse state, as you get to kidney failure and you're on dialysis or in need of a transplant, that's where you see the great disproportionality. For example, African Americans are 13% of the American population, yet 35% of those who have kidney failure. We've got to back up on that line of progression and ask why. We need the research to understand why."
We do know that many of these health disparities result from inequities in the social determinants of health — the social, economic and environmental factors that can disproportionately impact health outcomes for some groups. If the residents of predominantly Black and Hispanic communities cannot afford regular doctors' visits, cannot reliably access health education resources or lack affordable supermarkets with fresh produce in their area, this can have a major impact on residents' overall health. "The very zip codes, the very neighborhood that people live in will determine the higher incidence of disease," Burton said. One study looking at patients starting hemodialysis between 2000 and 2008 found that, among Black Americans, residence in highly racially segregated areas was associated with increased mortality.
In the U.S., people of color are also more likely to develop health issues related to kidney disease, such as diabetes, high blood pressure and heart disease, as well as cancer, than white people. As such, Burton was joined for the panel discussion by other nonprofit leaders, including Tracey Brown of the American Diabetes Association, Nancy Brown of the American Heart Association and Karen Knudsen of the American Cancer Society. They all stressed the need for solutions that address the root causes of health disparities by ensuring everyone can afford healthy food, regular doctors' visits and preventative care.
But efforts to improve health equity must also confront institutional racial bias. For example, recent studies suggest that our current method of blood testing for kidney disease — the eGFR test — may fail to diagnose Black Americans early and accurately. The eGFR currently considers race as a calculation factor, but experts are in the process of debating whether this factor should be removed.
"There are some suggestions that if we change that test and take out those racial factors, the number of people who would be diagnosed with a worse state of kidney disease could increase by up to a third," said Burton. "Now, we don't want to alarm patients. We want to have a conversation with patients about what we have been doing as a test and where we need to go, and we need to work on making those corrections. There are so many areas of our health care system where we are making assumptions. The way to eliminate social constructs, those assumptions, is to do the research." She stressed the urgent need to meaningfully involve patients of color in this medical research and establish trust by listening to patients about what they are experiencing.
Burton expressed optimism that federal action to address health disparities would be taken soon. "I'm so grateful for all the legislation moving on the Hill," she said. "A bill was introduced last week called the CARE for All Kidneys Act. It would increase research and develop an action plan for addressing kidney disease in communities of color. I'd love to see that bill move." AKF has worked closely with the bill sponsors, Lisa Blunt Rochester (D-DE) and Brad Wenstrup (R-OH), to introduce the bill and is now working to encourage other members of Congress to sign on as cosponsors.
The CARE for All Kidneys Act of 2021 would direct the Department of Health and Human Services to work in consultation with diverse stakeholders to create a national action plan for addressing kidney disease in underserved communities in the U.S. It would research the causes, including social determinants, of kidney disease and strive to increase kidney transplants in underserved communities as well as incentivize nephrologists to work in underserved communities by expanding scholarships and loan repayment programs.
U.S. Secretary of Health and Human Services Xavier Becerra, who also spoke at The Atlantic Summit, stated that his department will continue to prioritize the reduction of health disparities by expanding Medicaid, increasing enrollment in the Affordable Care Act and investing in childcare and pre-K nationwide.
A recording of the entire summit is available online.