There is a war going on right now pitting thousands of ailing patients and their doctors against people in board rooms in an effort to win the right to access lifesaving medications and treatments. Patients are literally dying while their newest adversary – a purportedly independent nonprofit organization responsible for making decisions that impact the health care of tens of millions of Americans – has the upper hand.

The Institute of Clinical and Economic Review, an insurance-backed nonprofit, issues reports developed primarily by economists that suggest price caps on groundbreaking medications. We believe ICER’s flawed methodology for evaluating drug value is a short-sighted approach that allows insurers to justify implementing drug rationing schemes so they can avoid paying for costly but potentially lifesaving medications. Insurance companies base their medication coverage on these findings.

Several days ago, ran a story about 25 nonprofits, including Global Healthy Living Foundation, alerting members of the U.S. Senate Finance Committee about our concerns with ICER’s restrictive methodology.

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About the Author

Seth D. Ginsberg began his 20-year career as a health advocate at age 13 when he was diagnosed with a form of arthritis called Spondyloarthritis. Since then, Seth has evolved into a passionate thought leader and social entrepreneur in the global health care conversation. He believes that all patients with chronic disease deserve the best access to care, and that it is everyone’s responsibility to participate in patient-centered research to unlock the clues needed for better health outcomes in the future. Seth spends his energy engineering that future. At 18, Seth helped pioneer the online patient community for others like himself who were suffering with arthritis, co-founding CreakyJoints. The CreakyJoints platform today is a highly customized, interactive delivery channel of relevant patient education, emotional and personal support services, advocacy initiatives and patient-centered research efforts. The Global Healthy Living Foundation is the non-profit parent organization of CreakyJoints, which Seth and CreakyJoints co-founder social entrepreneur Louis Tharp, created in 2004.