The Economic Burden of Rare Diseases: Quantifying the Sizeable Collective Burden and Offering Solutions

Faegre Drinker Consulting principal Nick Manetto coauthored an article for the Health Affairs Forefront blog with Sheldon Garrison, PhD, a research scientist with Rogers Behavioral Health; Annie Kennedy, the chief of policy, advocacy, and patient engagement of the EveryLife Foundation for Rare Diseases; Anne Pariser, MD, the director of the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences; Joni Rutter, PhD, the acting director of the National Center for Advancing Translational Sciences; and Grace Yang, a vice president of the Lewin Group.

The article breaks down a quartet of recent studies and reports that shed new light on the collective cost burdens posed by rare diseases, disorders, and conditions that combined affect between 25 and 30 million people in the United States. The studies confirm that the medical and non-medical costs of such conditions are substantial.

The authors also offer recommendations that, if implemented, would help others more fully capture and understand the complete medical and economic burdens of rare diseases and improve the industry’s ability to meet the needs of this population.