ROCKVILLE, Md. (Nov. 30, 2023) — Today the American Kidney Fund (AKF) released a new report that urges policymakers and advocates to broadly support measures — including improved screening and education — that will shape a brighter future for people living with kidney disease through earlier diagnosis and treatment.
Developed as part of AKF's Patient Access Initiative (PAI), a multi-year effort to better understand and address ongoing health care access issues faced by people with and at-risk for kidney disease and their caregivers, "A Call for Early Diagnosis and Treatment of Chronic Kidney Disease" summarizes the discussion and calls to action arising from AKF's inaugural PAI Summit held in April 2023. The summit convened a broad group of stakeholders, including patients, advocates and industry leaders, for panel discussions on patient and caregiver burden, regulatory challenges and health insurance design.
"Kidney disease continues to take a tremendous toll on far too many people in the United States, many of whom have significant issues accessing quality care," said LaVarne A. Burton, AKF President and CEO. "We are resolute in our commitment to elevating awareness of this serious disease and strongly advocating for policies that will improve patients' access to treatment."
The report calls for advocates and policymakers to focus on:
- Making screening and testing more widely available through clear guidelines: Nine out of 10 people with kidney disease are unaware they have it and nearly half of patients with stage 3b or 4 chronic kidney disease have not been referred to a nephrologist. Advocates urge the U.S. Preventive Services Task Force to make recommendations on screening for chronic kidney disease, and strongly support legislative action for direct Medicare reimbursement to genetic counselors.
- Educating health care providers and patients about kidney disease and treatment options: Patient advocates have identified patient education and navigation as major challenges. Many people at high risk aren't aware of their risk factors and don't know when to ask for screening for kidney disease. Recommendations include partnering with community organizations to develop culturally competent education materials.
- Pursuing improvements in the Food and Drug Administration (FDA) review and approval process: Recommendations include more nephrology expertise on FDA advisory committees and a strong patient voice to provide the patient perspective on living with kidney disease.
- Advocating for comprehensive coverage and value-based payment models for commercial insurers: There are few incentives in the health care system for payers to cover treatment and prevention of early stages of kidney disease. Recommendations include innovative approaches such as value-based payment models.
The report also recommends identifying opportunities for advocates and policymakers to weigh in on policies that impact chronic kidney disease care.
AKF's Patient Access Initiative is made possible thanks to generous support from Leadership Sponsors Travere Therapeutics, Novartis Pharmaceuticals Corporation, Champion Sponsors Horizon Therapeutics plc and Vertex Pharmaceuticals, Inc. and Supporting Sponsors Alexion, AstraZeneca Rare Disease and CSL Vifor.
About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.