Four leading kidney advocacy groups, Platinum recording artist Freeway, and the Congressional Kidney Caucus Join Together to Make Change for People with CKD

Despite significant prevalence among Americans, there are no federal government kidney screening recommendations for chronic kidney disease (CKD), which could increase testing and diagnosis and potentially allow for earlier treatment intervention. Today, four leading kidney patient and professional organizations, Platinum recording artist and kidney health advocate Freeway (Leslie Pridgen), and the Congressional Kidney Caucus took a powerful step to change that.

Earlier, U.S. Representatives Larry Bucshon, M.D. and Suzan DelBene, Co-Chairs of the Congressional Kidney Caucus, submitted a letter encouraging the Agency for Healthcare Research and Quality (AHRQ) and the U.S. Preventive Services Task Force (USPSTF) — agencies of the U.S. Department of Health and Human Services (HHS) responsible for developing federal recommendations related to health screenings — to move forward with a federal screening recommendation for chronic kidney disease (CKD). In a strong show of support, the letter was signed by 44 members of Congress.

The letter resulted from continued conversations around the need for the federally sanctioned guidelines stemming from a December bipartisan briefing in collaboration with the Congressional Kidney Caucus and supported by Bayer, that included leaders from the American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP), American Kidney Fund (AKF), and the National Kidney Foundation (NKF). The briefing discussion among organization leaders and Freeway, who shared his personal journey with kidney disease, focused on ways to create equitable kidney care and collectively help break down existing barriers to upstream screening, diagnosis, and treatment.

“There are 37 million Americans at some stage of kidney disease, and more than 800,000 people in kidney failure,”^1,2 said LaVarne Burton, President & CEO of AKF. “These numbers are staggering. This is the fastest growing noncontagious disease in this country. There's nothing more appropriate than a focus on diagnosis and reducing risk of progression, and yet 90% of people who have some stage of CKD don't even know it.”

“While there are multiple clinical guidelines that recommend annual screening for kidney disease in individuals with diabetes and hypertension, such as the American Diabetes Association and the Kidney Disease Global Outcomes guidelines, this is not happening,” said Dr. Sylvia Rosas, Associate Professor of Medicine at Harvard Medical School & President of NKF. “A screening recommendation from the U.S. Preventive Services Task Force is important because the majority of patients at risk are evaluated by primary care providers (PCPs) not specialists. PCPs follow the Task Force recommendations and health care systems frequently embed them in the electronic algorithms for care. Early identification of kidney disease could slow the progression to kidney failure and the need for dialysis.”

Over the past few decades, multiple treatments for chronic kidney disease have received approval from the U.S. Food and Drug Administration, advancing treatment and providing more options for patients and their health care teams.

“When I was first diagnosed with high blood pressure and diabetes in 2010, they told me that I had three risk factors — high blood pressure, diabetes, and being African American,” said Freeway. “I also had family members like my cousin and uncle who died from kidney disease. But I was never tested for CKD until I crashed into end stage kidney disease in 2015.”

“I’ve been at AKF now for 18 years. When I first arrived, we were talking about advocating for state legislation to mandate that there be early tests for kidney disease,” said Burton. “The primary care doctor’s concern was, ‘when I’m speaking with a patient, and the patient comes back and has CKD, or is at high risk for CKD, what do I tell them to do? I’m empty handed.’ That is no longer the case, and that’s why it’s so important for treatment options to be developed and to be well-known, not only by patients, but by primary care physicians.”

The letter stated, in part, that there is a crucial need to ensure that the methodical approach adopted by USPSTF does not inadvertently restrict access to essential screening for vulnerable populations and further exacerbate disparities in timely kidney care. USPSTF’s framework should recognize clinical diseases like diabetes and hypertension as independent risk factors for CKD, allowing for a more inclusive and effective screening strategy.³

“Over the course of the current and past three presidential administrations, and throughout multiple Congresses, the bipartisan national consensus on kidney disease has included the commitment to drive detection and treatment further upstream to reduce the occurrence and cost of kidney disease,” said Edward V. Hickey, III, President of AAKP and Chair of the Veterans Health Initiative.“ Any federal agency decision that falls short of this commitment to reduce the occurrence of kidney disease, including a failure to adopt early screening and detection, is fully inconsistent with national policy and should be viewed as a Government Determinant of Health that negatively impacts people at-risk and taxpayers.”

“We are allowing a chronic health crisis to grow when we have the tools to change it,” said Sebastian Guth, President of Bayer U.S. and Chief Operating Officer of Bayer Pharmaceuticals. “Greater access to testing and treatments can rewrite the story for kidney patients, and we applaud the leadership of Representatives Bucshon and DelBene and the advocacy groups that are strongly supporting the need for federal guidelines.”

“I feel like once people are aware that there is hope in available treatment options, they will be quick to get tested,” said Freeway. “When I was diagnosed with kidney failure, that was it. Dialysis was it. We have to spread awareness and let people know that they now have hope; hope is everything.”

¹ Centers for Disease Control and Prevention. (n.d.). Basics of chronic kidney disease. Retrieved May 14, 2024, from https://www.cdc.gov/kidney-disease/about/?CDC_AAref_Val=https://www.cdc.gov/kidneydisease/basics.html

² Centers for Disease Control and Prevention. (n.d.). Vital Signs: Preventing infections in dialysis patients. Retrieved May 14,2024, from https://www.cdc.gov/vitalsigns/dialysis-infections/index.html

³ Congress of the United States letter addressed to Robert Otto Valdez, Director of the Agency for Healthcare Quality and Research, and Michael Barry, Chair of the U.S. Preventive Services Task Force. Signed by 44 Members of Congress, submitted June 2024.

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