Improving early detection of kidney disease and addressing the unknown causes of kidney disease

Although 1 in 7 American adults are living with chronic kidney disease (CKD), most of them do not know it because it has no symptoms in the early stages. Millions more individuals are at risk of developing kidney disease and are not aware of their risks. Anyone can get kidney disease, but some people are more at risk than others. Diabetes and high blood pressure are the most common causes of kidney disease. Having a family history of kidney disease, being over age 60 and being of a certain race or ethnicity can also increase an individual's risk for kidney disease. However, for a number of people living with kidney disease, the cause of their kidney disease is unknown. Identifying the root cause of a person's kidney disease, both early in the disease and as a life-preserving necessity, is important for making crucial treatment decisions.

To improve the early detection of kidney disease and address the unknown causes of kidney disease, AKF supports policies that would:

• Expand the use of CKD screening to diagnose CKD in individuals as early as possible so they can begin to manage their disease and slow its progression, which could lead to better health outcomes for populations disproportionately impacted by kidney disease. As an important first step, we encourage the U.S. Preventive Services Task Force to reconsider making a recommendation for CKD screening.
• Increase access and expand coverage of genetic testing and counseling, particularly in public programs, for people living with kidney disease, which will help provide answers to patients seeking to understand the cause of their kidney disease. Having a clear diagnosis and identifying the root cause of a person's kidney disease will help patients and providers develop appropriate treatment plans that are tailored to the patient's specific needs. A clear diagnosis also allows people living with kidney disease to be informed of any genetic based susceptibility for family members.
• Establish national genetic testing and counseling standards for kidney disease through stakeholder collaboration and a consensus-driven, iterative process. Establishing national standards and cohesive guidelines will help ensure high quality care is consistently provided to all people living with kidney disease.

Increase awareness and resources for rare kidney disease to improve clinical research, provider training, diagnosis, prevention, and treatment of rare kidney disease. Certain rare kidney diseases do not have any approved treatments and inevitably lead to kidney failure. Rare kidney diseases also disproportionately affect communities of color, particularly Black Americans. More resources are needed to improve early diagnosis, better understand ways to slow the progression of rare kidney disease, and improve treatments for rare kidney disease.