Elevating Patient Voices in Ultra Rare Disease: Navigating ICER Reviews
On November 28, 2023, we hosted a webinar aimed at empowering advocates and patients to engage in the Institute for Clinical and Economic Review (ICER) value assessment review process. We covered the history of rare disease ICER reviews and where they fall short for patients. Our expert speakers provided the nuances of the review process and provided insights on how to effectively communicate the unique challenges faced by those with ultra rare diseases.
View the webinar below to learn how to grow your advocacy and help raise the collective patient voices during upcoming ICER reviews.
Rick Chapman, PhD
Chief Science Officer | Innovation and Value Initiative
Chapman holds a PhD in health policy with a concentration in decision sciences from Harvard University. He also holds an MS in health policy and management from the Harvard School of Public Health.
Darius Lakdawalla, PhD
Co-Founder, Chief Scientific Officer, entityrisk | Director of Research at the Schaeffer Center for Health Policy and Economics at USC
Darius Lakdawalla is a widely published, award-winning researcher and a leading authority on health economics and health policy. He holds the Quintiles Chair in Pharmaceutical Development and Regulatory Innovation at the University of Southern California, where he sits on the faculties of the School of Pharmacy, Sol Price School of Public Policy, and the Leonard D. Schaeffer Center for Health Policy and Economics, one of the nation’s premier health policy research centers. His research has focused on the economics of risks to health, the value and determinants of medical innovation, the economics of health insurance markets, and the industrial organization of healthcare markets. His work has appeared in leading peer-reviewed journals of economics, health policy, and medicine, including the American Economic Review, Quarterly Journal of Economics, Health Affairs, the Journal of Health Economics, and the New England Journal of Medicine. In addition, his work has been featured by prominent popular press outlets, such as the Wall Street Journal, National Public Radio, Forbes, and the New York Times. Darius received his Ph.D. in Economics from the University of Chicago and his B.A. in Mathematics and Philosophy from Amherst College.
Co-Founder and CEO Patients Rising
Terry Wilcox is a visionary leader, recognized as the co-founder and CEO of Patients Rising, a prominent non-profit organization dedicated to revolutionizing the American healthcare system with a patient-centric approach. Under her leadership, Patients Rising has established a robust and genuine patient network, cultivated a talented cadre of patient advocates, and spearheaded vital awareness campaigns on critical policy matters.
Terry is also the engaging co-host of the Patients Rising Podcast, now in its fourth season. Her insights and expertise have earned her recognition in prominent publications such as the Chicago Tribune Opinion, The Hill, Fortune, The Boston Globe, Washington Times, STAT, Los Angeles Daily News, Crain’s New York Business, American Thinker, The Federalist, Orange County Register, RealClear Health, Capitol Weekly, and numerous others.
Originally hailing from Texas, Terry spent 15 years in California before embracing her new home in the Washington, DC area, though she admittedly misses California’s climate. Her passion for improving healthcare outcomes continues to drive her work, making her an influential advocate for patients nationwide.
What’s ICER Missing? The Rare Patient Voice.
Patient Advocate Toolkit
✅ Uncover the history of rare disease ICER reviews
❌ Identify the shortcomings in the current process
🔍 Dive into the nuances of the review process
🔑 Gain insights on effectively communicating the unique challenges faced by ultra-rare disease patients
What is ICER?
The Institute for Clinical and Economic Review, or ICER, is a private entity that creates cost analysis reports that insurance companies use to deny patients access to innovative medical treatments
Decoding ICER’s statements and reports requires knowing the terms associated with cost-effectiveness assessments. Here is a glossary of the most common terms associated with the new value frameworks.
ICER Analysis and Commentary
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