On April 20, the American Kidney Fund (AKF) hosted its first Patient Access Initiative (PAI) Summit in Washington, D.C., bringing together stakeholders to discuss barriers to health care access, as well as possible solutions to ensure equitable access to quality health care that would help address the crisis in kidney disease. Panelists and participants of the summit included patients, caregivers, clinicians and other healthcare professionals, as well as representatives from the biopharmaceutical industry.
After opening remarks from AKF President and CEO LaVarne A. Burton, AKF Vice President of Government Affairs Holly Bode facilitated a fireside chat with former Secretary of the U.S. Department of Health and Human Services (HHS), Alex Azar. Secretary Azar shared his family's own story with kidney disease; discussed the Advancing American Kidney Health initiative and KidneyX, two important programs launched during his tenure at HHS that aim to improve care and drive innovation in kidney disease treatment; and discussed opportunities for improvement in diagnosing and treating kidney disease in its earlier stages.
The first panel discussion focused on patient and caregiver burden, including the burden on patients when they must change insurance coverage ("churn"); the increased burden on patients and their caregivers in managing their own care while lacking the necessary tools and support to do so; and challenges and opportunities in accessing genetic counseling and testing. A key theme that emerged from the discussion is the important role patient navigators can play in helping patients navigate the complexities of our health care system and advocate for their own care.
The second panel discussion focused on challenges at the Food and Drug Administration (FDA) and addressing barriers within the Cardiovascular and Renal Drugs Advisory Committee. The panelists discussed the need for better representation by nephrologists and kidney patients within the Committee, the value of the patient voice in the drug development and evaluation process, and the importance of the kidney community to engage with the FDA in its patient-focused drug development efforts.
The final panel discussion focused on insurance practices, particularly alternative payment models, best practices from the private sector in chronic kidney disease care and changing benefit design. The panel discussed the innovative work being done at UPMC, an integrated health system in Pittsburgh, that is using AI to identify patients at risk for kidney disease earlier so that they can get access to appropriate testing and treatment. The panel also discussed the promise of alternative payment models for kidney care being implemented in the Medicare program and exploring the potential of a multi-payer model to reach patients with private coverage and with earlier stages of chronic kidney disease.
In addition to the panels, there were breakout sessions where summit participants had the opportunity to further discuss in small groups the challenges and possible solutions related to the topics of the day.
The AKF PAI Summit was 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.