We must do more to be equitable in our care for people with kidney disease

Diabetes is more than a life-threatening disease; it is a life-altering disease. It is a chronic medical condition that must be monitored and addressed daily to stay healthy. Diabetes is also the leading cause of kidney failure.As an African American man with diabetes, the disease affects me every day. I must take insulin every day to survive. I must deal with physical discomfort when I move and walk every day. Also, I must go in for dialysis treatments almost every other day. I am fortunate to have health insurance to cover my health care costs. But my example does not represent the 12 percent of African Americans who remain uninsured. This disease and its complications cannot remain unchecked because people have and will continue to die.

The quality of health care that we receive is strongly tied to access to high-quality and affordable health insurance. Since the Patient Protection and Affordable Care Act was signed into law, the percentage of Black Americans who were uninsured decreased by 8 percentage points from 2011 to 2019. However, despite that progress in 2019, 12 percent of Black Americans were still uninsured, compared to 9 percent of White Americans, and disparities in health care access persist. They are forced to make decisions regarding whether to buy insulin or food. They are not able to get regular dialysis treatments. They are forced to make short-term decisions that can cause long-term health complications.

It is a problem that becomes greater every day. Although African Americans make up just 13 percent of the U.S. population, they account for 35 percent of Americans with kidney failure. Part of the problem is that African Americans have higher rates of conditions that can lead to diabetes and kidney failure, such as obesity and high blood pressure. African American adults are 40 percent more likely to have high blood pressure compared to non-Hispanic whites but are far less likely to have the means to control their blood pressure through diet and nutrition, maintenance medications, or a more invasive intervention. And African Americans are 1.3 times more likely to be obese as compared to non-Hispanic whites. But these conditions become worse because of the inequality of care African Americans receive compared to white Americans. In 2019, nearly 60 percent of all Black Americans in the U.S. lived in Southern states. Alabama, Florida, Georgia, and Mississippi are the states with both the highest percentage of Black Americans and the highest uninsured rates among Black adults in 2019. And all of these states have not expanded Medicaid eligibility to low-income adults with incomes up to 138 percent of the federal poverty level. Just this one action would provide millions of African Americans health insurance coverage and start to close this racial inequality gap. 

I was pleased to speak at the 2019 American Kidney Fund (AKF) Advocacy Day on Capitol Hill and the 11^th Annual AKF Hope Affair Gala. After I heard from AKF members during the COVID-19 pandemic, I lead my colleagues in a letter to congressional leadership urging them to prioritize dialysis patients and provider relief during the public health emergency. Non-profit organizations focused on kidney disease bring vital information to patients and their families by clinical experts through webinars, in-person consultation, and exceptional community-based engagement to bridge this gap in care. But it will take an act of Congress to really make a difference.

Thankfully, there is a bill in Congress that would shrink the health care inequities experienced by African Americans with chronic kidney disease. The Health Equity and Accountability Act (HEAA) would create a national action plan on kidney disease, including a comprehensive federal plan for more research and data collection on kidney disease in communities of color.  The plan would include steps to encourage participation of under-represented populations in clinical trials, so communities most affected by kidney disease are represented. The inclusion of more under-represented populations in studies will allow us to target specific health issues related to these populations in treatments and medicines for chronic kidney disease.  

In addition, the bill includes steps to develop pilot programs that demonstrate best practices for the diagnosis and management of kidney disease. Ideally, the HEAA would implement plans to expand public health programs, raise the number of transplants in communities of color, increase the use of home dialysis in communities of color and expand Medigap access for people with kidney failure.

Life with diabetes is a constant struggle. But it does not have to be that way for millions of African Americans with diabetes. We must take actions to understand how medical conditions, such as chronic kidney disease, affect people from different communities. We cannot continue to take a “one size fits all” approach to kidney treatments and care. We need to work to create awareness and help pass the HEAA. It would be a great step in the right direction.  

Donald M. Payne, Jr. represents New Jersey’s 10th District.