ROCKVILLE, Md. (April 20, 2023) — Today, the American Kidney Fund (AKF) is convening the first Patient Access Initiative Summit, during which stakeholders in the fight against kidney disease will discuss the patient and caregiver burden, regulatory challenges and health insurance design as part of an ongoing effort to better understand and address health care access issues faced by the kidney patient community.
About 37 million Americans have kidney disease, and millions more are at risk for developing this life-altering disease. It is often referred to as a silent killer because most people do not have physical symptoms until damage to their kidneys is very severe. While the damage cannot be reversed, early intervention can slow the progression of the disease. More than 800,000 people in the United States live with kidney failure, and the majority rely on dialysis to stay alive.
"The lack of widespread access to quality health care continues to be an urgent problem in kidney disease and has not yet been addressed to a degree that fully ensures equitable access to kidney care for all people," said AKF President and CEO LaVarne A. Burton, who will present opening remarks. "We are extremely grateful to each of our event sponsors who have made the Patient Access Initiative possible and we look forward to our ongoing collaboration to help find solutions to these critical issues that are a matter of life and death for so many people in the United States."
Alex Azar, who served as the 24th secretary of the Department of Health and Human Services and oversaw the Advancing American Kidney Health Initiative, is the plenary speaker for the event. Panel discussions at the summit will focus on:
- The patient and caregiver impact, including the growing burden on patients to manage their own care without the necessary tools and support to do so
- Challenges at the Food and Drug Administration in getting approval for products aimed at treating kidney patients at various stages of chronic kidney disease
- Insurance practices, including alternative payment models, best practices from the private sector and changing benefit design.
Leading up to today's summit, a steering committee comprising public policy experts, advocacy professionals, industry stakeholders, health care providers and kidney patients has been meeting regularly to review the current landscape, discuss barriers and solutions and help plan the summit and make recommendations for a path forward.
Objectives of the summit include:
- Identifying existing, widespread obstacles and challenges to achieving patient access to screening and innovative and effective treatments across the kidney care spectrum
- Collecting insights on the challenges patients and caregivers face while navigating public and private insurance coverage
- Understanding current resources used by patients and caregivers to get information about access to innovative and effective treatments
- Improving recognition of how racial, ethnic and socioeconomic challenges affect a patient's ability to access and afford innovative and effective treatments
- Creating strategies for improving provider education about new treatment innovations and equipping providers with tools to help patients access those innovations when approved
- Developing public policy solutions to patient access and affordability issues
The AKF Patient Access Initiative Summit is made possible thanks to generous seed Leadership support from Travere Therapeutics, in addition to support from Leadership Sponsor 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.