It’s time to make access to quality kidney care accessible and equitable for all

When COVID-19 first began sweeping through our country last year, it quickly became apparent that minority groups were affected at frighteningly disproportionate rates. According to the CDC, Black Americans more frequently test positive for the coronavirus, have been more likely to be hospitalized with severe illness than White Americans, and die at greater rates. In fact, literature on the pandemic has shown that 34 percent of COVID-19 deaths were among non-Hispanic Black people, even though this group makes up approximately 12 percent of the total U.S. population.

For kidney care advocates, these alarming disparities are hardly surprising. For years, we’ve known that both genetics and social determinants of health — like occupation, education and awareness, physical environment, diet and nutrition and access to health care — play an outsized role in serious disease. When it comes to Chronic Kidney Disease (CKD) and End-Stage Renal Disease (ESRD), the reality is stark: according to the United States Renal Data Service, the prevalence of kidney failure is 5,855 cases per million for Black Americans, compared to 1,704 cases per million for White Americans, due in large part to greater prevalence of co-morbid conditions like high blood pressure and diabetes.

Both COVID-19 and kidney failure are ongoing health care crises being fought on multiple fronts by health care providers, advocates and legislators. Fortunately, when it comes to ESRD, we’ve had years of study, planning and advocacy that have helped us arrive at a place where we can really make measurable inroads — particularly when it comes to racial disparities and improving outcomes.

Perhaps the most important development in years is the introduction of the bipartisan Chronic Kidney Disease Improvement in Research and Treatment Act in both the U.S. Senate and House of Representatives. The legislation includes critical elements to close gaps and lessen disparities for Americans living with — or at risk for — kidney failure.

Thanks to the leadership of Reps. Terri Sewell (D-Ala.) and Vern Buchanan (R-Fla.), and Sens. Ben Cardin (D-Md.) and Roy Blunt (R-Mo.), we can soon be several steps closer to better prevention, better care, and increased access.

This legislation includes important education initiatives that would allow for more robust efforts to educate Americans, particularly Black and Hispanic Americans, about their risk and ways to safeguard their health and avoid further disease progression. For the first time, dialysis facilities and physician assistants, nurse practitioners, and clinical nurse specialists would be empowered to offer kidney disease education services before kidney failure to Medicare beneficiaries with Stage 5 CKD. Patients often do not realize they have kidney disease until their kidneys have failed, so this bill would include CKD screening as part of a Medicare patient’s initial and annual preventative physical examination. This would allow at-risk beneficiaries to learn if they have the disease and seek treatment and early interventions to slow the disease progression to delay kidney failure or better prepare for transplant or dialysis. 

For Americans who are ultimately diagnosed with ESRD, passage of this legislation would mean improving the availability and accessibility of kidney care. For instance, it would ensure access to Medigap plans — so that Medicare ESRD patients younger than 65 could benefit from a financial safety net by receiving help to pay for co-pays and other costs to avoid crippling medical debt for themselves and their families.

Truly eliminating health disparities will also depend on deepening our knowledge about how and why those disparities exist in the first place. One of the most promising aspects of the Chronic Kidney Disease Improvement in Research and Treatment Act is its inclusion of a Research and Innovation initiative that would require the secretary of Health and Human Services (HHS) to submit a comprehensive report to Congress on several key issues. For example, the report would be required to provide legislators with more information on disincentives in the Medicare payment systems that create barriers to kidney transplants and post-transplant care. The report would also cover best practices to increase deceased and living organ donation rates, valuable information that would allow legislators to make informed and impactful policy changes.

Fighting the COVID-19 pandemic has demonstrated how tremendous collaboration among our kidney care community and policymakers in the pursuit of saving lives is, indeed, possible. I’m proud to be part of a truly community-wide organization that has been practicing this same collaboration for two decades — working toward new policies and initiatives that combat kidney disease in America, and particularly among the most vulnerable and at-risk Americans.

I hope — and am confident — that Congress will support and ultimately pass the Chronic Kidney Disease Improvement in Research and Treatment Act so that all Americans, and especially those at increased risk of kidney disease and kidney failure, can look forward to a healthier future, safe from the epidemic of kidney disease.

John Butler is chair of Kidney Care Partners and CEO of Akebia Therapeutics. Kidney Care Partners (KCP) is a coalition of 35 organizations, comprised of patient advocates, dialysis professionals, care providers, researchers, and manufacturers, dedicated to working together to improve quality of care for individuals with Chronic Kidney Disease.