Understanding the Economic Toll of Rare Disease in the United States

The economic burden of rare disease in the United States reached nearly $1 trillion in 2019, according to a new study from the Everylife Foundation for Rare Diseases. About 43 percent of that total is for direct medical costs. The balance includes such things as forced retirement, absenteeism, and presenteeism—the lost productivity of people who show up to work but are not fully functioning. We spoke to Annie Kennedy, chief of policy and advocacy at the EveryLife Foundation, about the study, its policy implications, and why the numbers are conservative.